2024 Blogs y Vlogs – Aspectos ocultos de los trastornos Hipofisarios al centro de las Campañas Camine con WAPO

Este año, WAPO ha creado dos campañas de sensibilización memorables para arrojar luz sobre los viajes de los pacientes con enfermedades hipofisarias raras. Camina con WAPO por el Mes de la Concienciación sobre la Pituitaria en octubre, y Camina con WAPO por el Día de Concienciación sobre la Acromegalia el 1º de noviembre, situaron las experiencias de los pacientes y el impacto invisible de estas afecciones en el centro de sus mensajes. Mediante una serie de infografías educativas y un vídeo protagonizado por personas que viven con acromegalia, buscamos concienciar y fomentar una mayor comprensión de la realidad de vivir con trastornos hipofisarios y los síntomas invisibles que los acompañan.

¿Qué es un síntoma invisible?

Los síntomas invisibles son síntomas físicos, mentales o neurológicos que no son inmediatamente visibles para los demás. En el contexto de un trastorno hipofisario, suelen referirse a la fatiga, el dolor, las dificultades cognitivas, los problemas de salud mental y los efectos de los desequilibrios hormonales que son difíciles de observar o comprender plenamente para los demás. Padecer una enfermedad con síntomas invisibles puede ser una experiencia solitaria y frustrante, ya que los profesionales sanitarios y otras personas de la vida personal o profesional pueden acusar al paciente de fingir o exagerar sus síntomas. Sin embargo, las personas que experimentan síntomas invisibles como parte de su enfermedad requieren atención psicosocial individualizada y adaptaciones para garantizar que puedan seguir participando, en la medida de sus posibilidades, en actividades escolares, laborales, sociales o domésticas. También merecen apoyo y empatía, no juicios ni estigmatización.

Camina con WAPO por el Mes de la Concienciación sobre la Pituitaria

Con motivo del Mes de la Concienciación sobre la Pituitaria, hemos creado cuatro infografías educativas, cada una de ellas publicada al comienzo de una nueva semana a lo largo de octubre. Cubrían las siguientes enfermedades raras: deficiencia de arginina-vasopresina (AVP) (también conocida como diabetes insípida central), enfermedad de Cushing, insuficiencia suprarrenal y acromegalia. La idea de estos pósters era recorrer el camino de un paciente, a través de sus síntomas iniciales, el proceso de diagnóstico, el tratamiento y el impacto a largo plazo de cada enfermedad. Previamente, también enviamos una encuesta para recoger citas de personas que viven con estas cuatro enfermedades, de modo que se pudieran amplificar sus voces y necesidades. Los participantes en la encuesta mencionaron a menudo síntomas invisibles, que se incluyeron en nuestra infografía para cada una de las cuatro enfermedades hipofisarias.

En cuanto a la deficiencia de AVP, un paciente dijo: “Mis primeros síntomas fueron micciones muy frecuentes y abundantes, casi incoloras, y una sed insaciable. Oriné más de 7 litros en 24 horas” Como puede imaginarse, la sed constante y la necesidad de orinar tienen un enorme impacto en la vida diaria del paciente.

En cuanto a la enfermedad de Cushing, los pacientes mencionaron cosas como “pensamientos incontrolados y confusión, niebla cerebral e insomnio“. La pérdida de memoria o los problemas de concentración pueden ser muy difíciles de entender para los pacientes y también para sus seres queridos.

Los pacientes con insuficiencia suprarrenal informaron de fatiga y náuseas graves, y uno de los encuestados declaró que “tuvo un gran impacto en mi vida, sobre todo por la fatiga“. Los bajos niveles de energía y la sensación de fatiga limitan la capacidad del paciente para participar en actividades que antes disfrutaba y debe aprender a darse tiempo para descansar y recuperarse.

Los pacientes con acromegalia mencionaron con frecuencia las cefaleas, la apnea del sueño y el dolor articular como síntomas de presentación. El dolor crónico puede ser debilitante y tener un impacto significativo en el sueño y el funcionamiento normal.

Muchos encuestados mencionaron la importancia de los grupos de apoyo o las organizaciones de pacientes. Uno dijo: “Los grupos de apoyo son un salvavidas. Saber que no estás solo y que puedes hablar de tus cosas con otras personas que entienden perfectamente por lo que has pasado puede hacerte sentir validado, permitirte regodearte cuando lo necesites y levantarte cuando estés listo para superar los momentos difíciles“.

Los carteles infográficos pueden verse y descargarse aquí:

Si desea que se traduzcan a su lengua local, póngase en contacto con WAPO para ver si ya existe una traducción.

 Camina con la WAPO en el Día de Concienciación sobre la Acromegalia

“Los primeros síntomas y cambios que noté en mi salud con la acromegalia fueron dolores intensos, todas las noches, en manos y pies“- Mayulabis.

Para el día de concienciación sobre la acromegalia entrevistamos a nueve defensores de pacientes que respondieron a una serie de preguntas por vídeo. El vídeo recopilatorio resultante trataba temas como los primeros síntomas, el camino hasta el diagnóstico (a menudo muy largo), la gestión y el tratamiento, así como el impacto de la acromegalia en sus vidas y en las de su familia.

En este vídeo se mencionan muchos ejemplos de síntomas invisibles. Se corresponden con los resultados de un estudio de 2022 sobre el impacto psicosocial de vivir con afecciones hipofisarias, en el que se informaba de que los efectos físicos y cognitivos notificados con más frecuencia eran la fatiga, seguida del dolor y los trastornos del sueño. El dolor y la fatiga son subjetivos, lo que dificulta su comprensión y que se tomen en serio. Esto, junto con la falta de concienciación en la comunidad médica, puede ser una de las razones por las que los pacientes con acromegalia pueden esperar de 5 a 10 años desde el inicio de los síntomas hasta recibir su diagnóstico. Varios participantes mencionaron el cansancio y el dolor, como Donna, que dijo: “Si tuviera que utilizar una palabra para describir la acromegalia, probablemente sería agotador“.

El mismo estudio de 2022 señalaba los cambios de humor, la ansiedad y la depresión, así como la baja autoestima, los problemas emocionales y de comportamiento más comunes que experimentan los pacientes con afecciones hipofisarias. De hecho, escuchamos historias similares de los defensores de pacientes entrevistados, que decían cosas como “adquieres una nueva personalidad que no está a la altura de la anterior” y “física, mental y socialmente, te cambia el mundo“. También se mencionó la importancia de informar a los cuidadores y familiares de estos posibles cambios de personalidad, para evitar que se dañen relaciones importantes.

Vea aquí el vídeo completo del Día de Concienciación sobre la Acromegalia

 

Tenemos que hablar de todos los tipos de síntomas y gestionarlos

“Nunca preguntan. No preguntan: “¿Cómo estás?” Yo misma sentía, al principio, que la enfermedad era tabú” – Marie Louise

Cuando los pacientes se sienten incapaces de hablar de su enfermedad o sus síntomas con su familia, amigos y compañeros, esto puede tener un impacto negativo tanto en su salud mental como física. Los síntomas invisibles también pueden afectar la capacidad laboral del paciente, lo que puede afectar su seguridad económica.  Un estudio de 2018 exploró la discapacidad laboral en pacientes con enfermedad relacionada con tumores hipofisarios, y descubrió que las demandas mentales y sociales del trabajo eran los problemas más comúnmente experimentados. Puede que los pacientes eviten hablar con sus jefes sobre su enfermedad por miedo a las repercusiones o a la estigmatización. Si se sienten incomprendidos por sus amigos y familiares, puede que se retiren de las actividades sociales y experimenten sentimientos de aislamiento, lo que puede ser perjudicial para su salud mental.

Por eso es tan importante contar con un sistema de apoyo y, a veces, esto puede significar encontrar a otras personas que están recorriendo el mismo camino o que viven con la misma enfermedad.  Como Jeremie describe en el vídeo: “El apoyo de las personas que te rodean, como tu familia, tus amigos y tus seres queridos, dará definitivamente significado a tu viaje en la lucha contra esta enfermedad rara”. Contar con una sólida red de apoyo puede ayudar a mejorar la calidad de vida del paciente.

Esperamos que las campañas “Camina con WAPO ” tengan eco en muchas personas y contribuyan a mejorar la percepción y el apoyo de la sociedad a las personas con trastornos hipofisarios, tanto si sus síntomas son visibles como si no lo son.

Por favor, siga compartiendo estos recursos de WAPO durante las fiestas y el próximo año. El verdadero cambio requiere conversaciones abiertas en las que escuchemos a los demás e intentemos comprender sus necesidades particulares. También son necesarias adaptaciones en escuelas y lugares de trabajo, así como una mayor sensibilización entre los profesionales sanitarios y la comunidad en general. A la pregunta: “¿Qué le gustaría que supiera más gente sobre su enfermedad?“, uno de los encuestados respondió: “Me gustaría que supieran que vivir así es difícil en todos los aspectos de la vida, y que como sociedad podemos trabajar con más empatía para poder eliminar los estigmas sociales.”

Si le han gustado las campañas de sensibilización de WAPO de este año o tiene sugerencias para futuras iniciativas de WAPO, nos encantaría recibir sus comentarios.

Por último, queremos dar las gracias una vez más a los pacientes que participaron en estas campañas, tanto a los que compartieron sus historias en vídeo como a quienes aportaron citas para los pósters. Estamos muy agradecidos por su valentía y perspicacia, y son sus contribuciones las que han hecho que las campañas “Camina con WAPO” hayan sido un gran éxito.

Sigamos concienciando sobre los trastornos hipofisarios e inspirando el cambio hacia una sociedad más integradora y empática para todos.

 

Referencias:

https://hdsunflower.com/uk/insights/post/what-is-a-hidden-disability

Lobatto, Daniel J et al. “Incapacidad laboral y sus determinantes en pacientes con enfermedad relacionada con tumor hipofisario” Pituitaria vol. 21,6 (2018): 593-604. doi:10.1007/s11102-018-0913-3

Norman, Alyson et al. “Discapacidad oculta: un estudio del impacto psicosocial de vivir con afecciones hipofisarias” Revista británica de enfermería (Mark Allen Publishing) vol. 31,11 (2022): 590-597. doi:10.12968/bjon.2022.31.11.590

 

2024 Blogs y Vlogs – Por qué es tan importante concienciar sobre los trastornos hipofisarios


Octubre es el mes de la concienciación sobre la pituitaria y, aunque puede que este mes esté llegando a su fin, la concienciación sobre los trastornos hipofisarios sigue siendo tan importante como siempre. En este blog de WAPO trataremos algunas de las razones por las que la concienciación sobre los trastornos hipofisarios es algo por lo que todos deberíamos esforzarnos.

Como la hipófisis regula muchas de las funciones de nuestro organismo

La hipófisis es una pequeña estructura situada bajo el hipotálamo del cerebro que controla las funciones de las glándulas endocrinas secretoras de hormonas de todo el cuerpo. Debido a esta capacidad para regular las hormonas del cuerpo que actúan sobre diversos órganos, una disfunción de la hipófisis puede provocar desequilibrios que afecten a muchos de nuestros procesos naturales, como el crecimiento, el metabolismo y la reproducción. Nuestro estado de ánimo y nuestras emociones también pueden verse afectados. Estos desequilibrios hormonales pueden provocar cambios irreversibles en el organismo, así como comorbilidades que pueden tener un impacto significativo en la calidad y esperanza de vida del paciente. Por lo tanto, es crucial concienciar sobre la hipófisis y el papel que desempeña en nuestra salud general, así como sobre las afecciones que pueden provocar su disfunción.

Porque sus síntomas iniciales pueden confundirse con afecciones más comunes

Algunos de los síntomas que presentan los trastornos hipofisarios pueden ser inespecíficos y simular otras afecciones más comunes. La insuficiencia suprarrenal, por ejemplo, puede presentarse con fatiga, debilidad, náuseas y pérdida de peso, que pueden atribuirse falsamente a la ansiedad o a problemas gastrointestinales. El síndrome de Cushing puede presentarse con aumento de peso, hipertensión y fatiga, que pueden atribuirse fácilmente a la obesidad.

Esto significa que muchos pacientes con un trastorno hipofisario suelen visitar a numerosos médicos antes de recibir un diagnóstico correcto. En un metaanálisis de múltiples estudios publicado recientemente, el tiempo medio transcurrido desde el inicio de los síntomas hasta el diagnóstico en pacientes con síndrome de Cushing relacionado con la hipófisis fue de 38 meses. Sin embargo, algunos pacientes han declarado haber esperado hasta 20 años antes de ser diagnosticados.

Esto indica que existe una necesidad urgente de concienciar a la comunidad médica sobre los trastornos hipofisarios, de modo que los médicos generalistas puedan reconocer patrones específicos de síntomas y presentaciones inusuales que puedan indicar un trastorno hipofisario.

Educar al público en general acerca de algunas de las señales de alarma de los trastornos hipofisarios también puede incitar a las personas a preguntar a su médico acerca de estos signos o síntomas, con la esperanza de reducir el tiempo hasta el diagnóstico. Por ejemplo, las señales de alarma del prolactinoma incluyen la ausencia o irregularidad de las menstruaciones asociadas a la producción de leche en las niñas (sin relación con el embarazo) y la disfunción sexual en los varones. Algunas señales de alarma de la acromegalia son el aumento del número de calzado o el agrandamiento de las manos, en las que ya no caben los anillos. Sensibilizar sobre los trastornos hipofisarios es una forma de difundir este tipo de valiosos conocimientos.

Para aumentar las posibilidades de un diagnóstico precoz y prevenir complicaciones a largo plazo

Cuanto antes se diagnostique un trastorno hipofisario, mejor será el resultado.

Los pacientes con acromegalia, por ejemplo, pueden sufrir comorbilidades que afectan a los sistemas cardiovascular, respiratorio, metabólico, neuropsiquiátrico y musculoesquelético. Estas comorbilidades pueden repercutir tanto en su calidad como en su esperanza de vida, si no se trata el aumento de la producción de la hormona del crecimiento (GH) y del factor de crecimiento similar a la insulina tipo 1 (IGF-1). Sin embargo, si se diagnostican y tratan a tiempo, estas comorbilidades pueden prevenirse o retrasarse.

Diversos estudios han demostrado que la tasa de mortalidad de las personas con acromegalia revierte a la de la población general si se proporciona un tratamiento adecuado para normalizar los niveles de GH e IGF-1.

En personas con insuficiencia suprarrenal, que se caracteriza por una falta de producción de cortisol por parte de las glándulas suprarrenales, el diagnóstico precoz es clave a la hora de garantizar mejores resultados a largo plazo para los pacientes. En primer lugar, un diagnóstico precoz puede evitar que los pacientes presenten una crisis suprarrenal potencialmente mortal. En segundo lugar, les permite iniciar una terapia hormonal sustitutiva para corregir la deficiencia de glucocorticoides y ayudar a aliviar sus síntomas. Por último, con un diagnóstico pueden recibir educación para pacientes sobre cómo adaptar su medicación en momentos de estrés o enfermedad y aprender la importancia de llevar siempre consigo un kit de hidrocortisona de emergencia.

Para que esto ocurra, es necesario que se lleven a cabo más acciones para garantizar que los proveedores de atención primaria conozcan estas enfermedades, de modo que los pacientes puedan ser derivados rápidamente a un endocrinólogo para un diagnóstico oportuno.

Para romper la soledad y el aislamiento

Cuando se les diagnostica un trastorno hipofisario, muchas personas describen un sentimiento de soledad y aislamiento debido a la rareza de su enfermedad. Dependiendo de la enfermedad concreta, puede ser difícil encontrar a alguien que padezca la misma enfermedad en su zona. Esto es exactamente lo que vivieron Claire Barlow y Jennifer Kenworthy tras ser diagnosticadas de síndrome de Sheehan (necrosis hipofisaria posparto). Así fue hasta que decidieron crear Maternal Pituitary Support para ofrecer apoyo a otras mujeres y abogar por los trastornos hipofisarios maternos (escucha su historia en este Vlog de WAPO).

Encontrar una organización de pacientes que apoye a las personas que padecen una enfermedad específica o un grupo de enfermedades es un paso importante en el camino del paciente. Incluso cuando cuentan con el apoyo adecuado de sus amigos y familiares, nada sustituye la sensación de que alguien comprenda realmente por lo que usted y su familia están pasando. Es muy importante contar con un grupo de personas con experiencia que puedan guiarte en los retos cotidianos que puedas encontrarte. Los cuidadores también pueden beneficiarse de conocer a otras personas que cuidan de alguien con un trastorno hipofisario.

Al aumentar la concienciación sobre los trastornos hipofisarios y las organizaciones de pacientes asociadas, hay más posibilidades de que los pacientes y cuidadores encuentren a otros como ellos y localicen los grupos de apoyo adecuados que puedan mejorar su salud mental y su calidad de vida en general.

Para empoderar a los pacientes para que puedan abogar por sí mismos

Cuando vemos a otros como nosotros en roles de defensa, es más probable que queramos participar, aprender más sobre nuestra enfermedad y compartir nuestras historias. Por eso es tan importante la participación de los defensores del paciente en las actividades de sensibilización. Los defensores de los pacientes que comparten su experiencia de vivir con un trastorno hipofisario dan a otros el valor de compartir igualmente su voz, creando un efecto dominó de acciones de defensa y empoderamiento.

¡Nunca subestimes el poder que tu historia puede tener en los demás! Por ello, WAPO se esfuerza por compartir historias de pacientes, como en sus Vlogs Comorbilidades del síndrome de Cushing: Prioridades para los pacientes vs los profesionales sanitarios o El déficit de Arginina- Vasopresina y la  Diabetes Insípida Central.

Para sensibilizar sobre las discapacidades invisibles

Como muchas enfermedades raras, los trastornos hipofisarios suelen ir acompañados de discapacidades invisibles como fatiga, dolor, trastornos del sueño y trastornos mentales como depresión y ansiedad.

Los pacientes afirman que estas discapacidades invisibles pueden tener un impacto significativo en su calidad de vida. La falta de comprensión por parte de familiares, compañeros de trabajo o el público en general puede provocar sentimientos de aislamiento. Las relaciones pueden volverse tensas si hay falta de empatía o incomprensión por parte de personas que piensan que el paciente debería “volver a la normalidad” tras recibir tratamiento.

Esto es similar para los pacientes con cualquier enfermedad crónica que conlleve una discapacidad invisible, por lo que dedicar tiempo a comprender las discapacidades invisibles que experimentan los pacientes con un trastorno hipofisario puede ayudarle a ser más consciente de este término y más compasivo con otras personas que compartan sus discapacidades invisibles con usted en el futuro. Para saber más sobre las discapacidades invisibles, puede visitar el sitio web de Discapacidades Ocultas.

Para aumentar el acceso a la atención especializada

Dado que las afecciones hipofisarias tienen una enorme repercusión en el cuerpo y en múltiples sistemas orgánicos, es importante que sean tratadas por un equipo multidisciplinar con experiencia en el tratamiento de trastornos endocrinos. Sin embargo, en algunos países no existen centros de referencia con experiencia en trastornos hipofisarios. Los esfuerzos de defensa liderados por los pacientes dieron lugar a la creación de las Redes Europeas de Referencia para Enfermedades Raras, y de ENDO-ERN (ERN: Enfermedades Endocrinas Raras) en particular, en 2017. Dentro de esta red, todos los proveedores sanitarios miembros han sido reconocidos como centros de referencia para afecciones endocrinas y pueden ofrecer consultas virtuales, a través de una plataforma dedicada, a médicos con pacientes en países de toda Europa. Esto permite disminuir las desigualdades geográficas, en términos de acceso a la atención especializada.

Concienciando a los profesionales sanitarios y a los responsables políticos sobre los trastornos hipofisarios, podemos garantizar que se proporcionen fondos para apoyar y desarrollar iniciativas que permitan a los pacientes recibir el tratamiento que necesitan, vivan donde vivan.

Ahora que ya tiene una lista de razones por las que es tan importante concienciar sobre los trastornos hipofisarios, ayúdenos a compartir información y a defender a las personas que padecen estas afecciones.

Puede empezar compartiendo los cuatro carteles “Camina con WAPO” que hemos creado este año para el Mes de la Concienciación Pituitaria sobre el Déficit de Arginina-Vasopresina, la Enfermedad de Cushing, la Insuficiencia Suprarrenal y la Acromegalia (descárguelos aquí).

Asegúrese también de seguir a WAPO en nuestros canales de redes sociales para poder compartir nuestras publicaciones con su red. Obtenga más información sobre los muchos trastornos hipofisarios en el sitio web de WAPO para reconocer sus síntomas y brindar mayor conocimiento también a quienes lo rodean.

¡Juntos podemos ayudar a que el futuro sea más brillante para todas las personas que padecen un trastorno hipofisario!

Referencias:

Rubinstein, German et al. “Tiempo hasta el diagnóstico en el síndrome de Cushing: Un metaanálisis basado en 5367 pacientes” The Journal of clinical endocrinology and metabolism vol. 105,3 (2020): dgz136. doi:10.1210/clinem/dgz136

Norman, Alyson et al. “Discapacidad oculta: un estudio del impacto psicosocial de vivir con afecciones hipofisarias” Revista británica de enfermería (Mark Allen Publishing) vol. 31,11 (2022): 590-597. doi:10.12968/bjon.2022.31.11.590

Brue, Thierry, y Frédéric Castinetti. “Los riesgos de pasar por alto el diagnóstico de los adenomas hipofisarios secretores” Revista Orphanet de enfermedades raras vol. 11,1 135. 6 oct. 2016, doi:10.1186/s13023-016-0516-x

Gadelha, Mônica R et al. “Complicaciones sistémicas de la acromegalia e impacto del panorama terapéutico actual: Una actualización” Endocrine reviews vol. 40,1 (2019): 268-332. doi:10.1210/er.2018-00115

Bleicken, Benjamin et al. “El retraso en el diagnóstico de la insuficiencia suprarrenal es frecuente: estudio transversal en 216 pacientes” The American journal of the medical sciences vol. 339,6 (2010): 525-31. doi:10.1097/MAJ.0b013e3181db6b7a

2024 WAPO Blogs and Vlogs – Why raising awareness for pituitary disorders is so important


October is Pituitary Awareness month and while this month may be coming to an end, raising awareness for pituitary disorders remains as important as ever. In this WAPO Blog we will cover some of the reasons why raising awareness for pituitary disorders is something we should all striveto do.

Because the pituitary gland regulates many of our body’s functions

The pituitary gland, a small structure located under the hypothalamus of the brain, controls the functions of the hormone-secreting endocrine glands throughout the body. Due to this ability to regulate the hormones of the body that act on various organs, a dysfunction in the pituitary gland can lead to imbalances that affect many of our natural processes, including growth, metabolism, and reproduction. Our mood and emotions can also be affected. These hormonal imbalances can lead to irreversible changes in the body and comorbidities that can have a significant impact on a patient’s quality of life and life expectancy. It is therefore crucial to raise awareness for the pituitary gland and the role it plays in our overall health and for the conditions that can cause it to dysfunction.

Because their initial symptoms can be mistaken for more common conditions

Some of the presenting symptoms of pituitary disorders can be non-specific and mimic other more common conditions. Adrenal insufficiency, for example, may present with fatigue, weakness, nausea and weight loss, which can be falsely attributed to anxiety or gastrointestinal problems. Cushing’s syndrome may present with weight gain, hypertenstion and fatigue, which can easily be attributed to obesity.

This means that many patients with a pituitary disorder often visit numerous doctors before receiving a correct diagnosis. In a recently published meta-analysis of multiple studies, the average time from symptom onset to diagnosis in patients with pituitary-related Cushing’s syndrome was 38 months. However, some patients have reported waiting as long as 20 years before being diagnosed.

This indicates that there is an urgent need to raise awareness for pituitary disorders in the medical community so that general practitioners can recognize specific patterns of symptoms and unusual presentations that may indicate a pituitary disorder.

Educating the general public about some of the “red flags”of pituitary disorders can also prompt people to ask their doctor about these signs or symptoms, hopefully decreasing their time to diagnosis. For example, “red flags” for prolactinoma include absent or irregular periods associated with milk production from the breasts (unrelated to pregnancy) in girls and sexual dysfunction in males. Some “red flags” for acromegaly include an increase in shoe size or enlarged hands with rings no longer fitting. Raising awareness for pituitary disorders is one way to spread this kind of valuable knowledge.

To increase the chance of early diagnosis and prevent long-term complications

The earlier the diagnosis of a pituitary disorder, the better the outcome.

Patients with acromegaly, for example, can suffer from comorbidities affecting the cardiovascular, respiratory, metabolic, neuropsychiatric, and musculoskeletal systems. These comorbidities can impact both their quality of life and their life expectancy, if the increased production of growth hormone (GH) and insulin-like growth factor-1 (IGF-1) is left untreated. However, if diagnosed and treated early, these comorbidities can be prevented or delayed.

Various studies have shown that the mortality rate in people with acromegaly reverses to that of the general population if adequate treatment is provided to normalize GH and IGF-1 levels.

In people with adrenal insufficiency, which is characterized a lack of cortisol production from the adrenal glands, early diagnosis is key when it comes to ensuring better long-term outcomes for patients. Firstly, being diagnosed early can save patients from presenting with a life-threatening adrenal crisis. Secondly, it allows them to start hormone replacement therapy in order to correct the glucocorticoid deficiency and help alleviate their symptoms. Finally, with a diagnosis they can receive patient education on how to adapt their medication in times of stress or illness and learn the importance of carrying an emergency hydrocortisone kit with them at all times.

In order for this to take place there needs to be more actions to ensure that primary care providers are aware of these diseases so that patients can be quickly referred to an endocrinologist for a timely diagnosis.

To break loneliness and isolation

When diagnosed with a pituitary disorder many people describe a feeling of loneliness and isolation due to the rarity of their disease. Depending on the specific condition, it may be difficult to find anyone living with the same disease in your area. This is exactly what Claire Barlow and Jennifer Kenworthy experienced after being diagnosed with Sheehan’s syndrome (postpartum pituitary necrosis). That was until they decided to create Maternal Pituitary Support in order to provide support to other women and advocate for maternal pituitary disorders (listen to their story in the WAPO Vlog here).

Finding a patient organization that supports people living with either their specific condition or group of conditions is an important step in a patient’s journey. Even when properly supported by their friends and family, nothing replaces the feeling of someone truly understanding what you and your family are going through. Having a group of people with lived experience, that can guide you through the day to day challenges you may encounter, is so important. Caregivers can also benefit from meeting others that care for someone with a pituitary disorder.

By raising awareness for pituitary disorders and the associated patient organizations, there is a better chance that patients and caregivers will find others like themselves and locate the right support groups that can improve their mental health and overall quality of life.

To empower patients to self-advocate

When we see others like ourselves in advocacy roles, we are more likely to want to join in, learn more about our condition, and share our stories. This is why the participation of patient advocates in awareness raising activities is so important. Patient advocates that share their experience of living with a pituitary disorder give others the courage to equally share their voice, creating a ripple effect of advocacy actions and empowerment.

Never underestimate the power that your story can have on someone else! This is why WAPO strives to share patient stories, such as in its WAPO Vlogs Cushing Syndrome Comorbidities: Priorities for Patients Vs Healthcare or Shining Light on Arginine Vasopressin Deficiency (AVP-D)/ Central Diabetes Insipidus.

To increase awareness around invisible disabilities

Like many rare diseases, pituitary disorders are often accompanied by invisible disabilities including fatigue, pain, sleep disturbances, and mental health disorders such as depression and anxiety.

Patients report that these invisible disabilities can have a significant impact on their quality of life. Lack of understanding from family members, co-workers or the general public can lead to feelings of isolation. Relationships can become strained if there is a lack of empathy or misunderstanding from people thinking that the patient should be “back to normal” after receiving treatment.

This is similar for patients with any chronic disease that carries an invisible disability, which is why taking the time to understand the invisible disabilities experienced by patients with a pituitary disorder can help you be more aware of this term and more compassionate towards others who share their invisible disabilities with you in the future. To learn more about invisible disabilities, you can visit the Hidden Disabilities website.

To increase access to specialized care

Because pituitary conditions have a huge impact on the body and multiple organ systems, it is important that they are treated by a multidisciplinary team with expertise in managing endocrine disorders. However, in some countries, no reference centers with expertise in pituitary disorders exist. Advocacy efforts led by patients gave rise to the creation of the European Reference Networks for Rare Diseases, and of ENDO-ERN (the ERN for Rare Endocrine Conditions) in particular, in 2017. Within this network, the healthcare provider members have all been recognized as reference centers for endocrine conditions and they can provide virtual consultations, through a dedicated platform, to doctors with patients in countries all across Europe. This allows for geographical inequalities, in terms of access to specialized care, to be decreased.

By raising awareness for pituitary disorders with healthcare professionals and policy makers, we can ensure that funding is provided to support and develop initiatives that allow patients to receive the treatment they need, no matter where they live.

Now that you have a list of reasons why raising awareness for pituitary disorders is so important, why not help us share information and advocate for the people living with these conditions.

You can start by sharing the four “Walk with WAPO” posters we created this year for Pituitary Awareness Month on Arginine-Vasopressin Deficiency, Cushing’s Disease, Adrenal Insufficiency and Acromegaly (download them here).

You can also make sure to follow WAPO on our social media channels so that you can share our posts with your network. Learn more about the many pituitary disorders on the WAPO website so that you can recognize their symptoms and educate those around you.

Together we can help to make the future brighter for all people living with a pituitary disorder!

 

References:

Rubinstein, German et al. “Time to Diagnosis in Cushing’s Syndrome: A Meta-Analysis Based on 5367 Patients.” The Journal of clinical endocrinology and metabolism vol. 105,3 (2020): dgz136. doi:10.1210/clinem/dgz136

Norman, Alyson et al. “Hidden disability: a study of the psychosocial impact of living with pituitary conditions.” British journal of nursing (Mark Allen Publishing) vol. 31,11 (2022): 590-597. doi:10.12968/bjon.2022.31.11.590

Brue, Thierry, and Frederic Castinetti. “The risks of overlooking the diagnosis of secreting pituitary adenomas.” Orphanet journal of rare diseases vol. 11,1 135. 6 Oct. 2016, doi:10.1186/s13023-016-0516-x

Gadelha, Mônica R et al. “Systemic Complications of Acromegaly and the Impact of the Current Treatment Landscape: An Update.” Endocrine reviews vol. 40,1 (2019): 268-332. doi:10.1210/er.2018-00115

Bleicken, Benjamin et al. “Delayed diagnosis of adrenal insufficiency is common: a cross-sectional study in 216 patients.” The American journal of the medical sciences vol. 339,6 (2010): 525-31. doi:10.1097/MAJ.0b013e3181db6b7a

2024 WAPO Blogs and Vlogs: Mid-Year Recap and What’s Coming Next

As we approach the halfway mark of 2024, we thought it would be the perfect time to provide a comprehensive recap of the 2024 WAPO Blogs and Vlogs series and give you a preview of what’s coming this fall. Whether you are a patient, healthcare professional, or someone simply interested in learning more about pituitary disorders, there is something for everyone!

Topics already covered to date: catch up on what you missed

We started the year with an informative blog article on Navigating Nutrition and Pituitary Disorders in January. This blog explored the pituitary gland and its hormones, the role that diet plays in maintaining hormone health and shared recommendations to help balance your hormones and improve your overall wellbeing when living with a pituitary disorder.

In February, we released the first vlog on the topic of what makes a successful patient-healthcare professional relationship? This video featured Els Rutten, a genetic counselor and endocrine nurse, who shared what she believes to be the foundation of a successful relationship between patients and healthcare professionals. She provided useful tips for healthcare professionals and provided examples of the positive effects that making some changes can have on patients and their families. This video goes beyond the pituitary community as her advice is invaluable to all healthcare professionals wishing to improve their patients’ experience and quality of life.

Watch it again on the WAPO YouTube channel in either English or Spanish.  You can also find them in the WAPO library.

In March, Clive Deverson shared important information and resources covering a topic that is of great interest to the patient community: Collaborations between Patient Advocacy Groups and Pharmaceutical Companies.  He detailed the restrictions and challenges facing the pharmaceutical industry when it comes to working with patients as well as current trends in this area. He equally shared several toolkits and resources that patient organizations can refer to for their future collaborations with the pharmaceutical industry.

In April we were joined by Patricia Gildroy for a vlog entitled Shining Light on Arginine Vasopressin Deficiency (AVP-D)/ Central Diabetes Insipidus. Patricia is lead administrator for the Facebook group Got Diabetes Insipidus? Got Arginine VasoPressin Deficiency (AVP-D) or Resistance? And in this video she shared her personal story with AVP-D, how to avoid potential complications, and the need to better inform healthcare professionals of AVP-D, as it is still frequently confused with diabetes mellitus. This video is a great one to share in order to raise awareness for this rare disease.

Watch it again on the WAPO Youtube channel in either English or Spanish. You can also find them in the WAPO library.

For the next blog article, which was released in May, we outlined our Top Tips for Travelling with a Pituitary Disorder. This article gives patients with pituitary disorders a useful guide to ensure their travels are as stress-free as possible. From what important documents to bring (such as emergency cards, a medication passport or other awareness material) to adjusting to a new time zone, it’s the perfect article to read before and during your summer vacation this year.


Preview of what’s still to come: sneak peak

 Coming August 29th, 2024 we will release our 3rd vlog entitled Cushing syndrome comorbidities: priorities for patients vs. priorities for the healthcare professional. This is one you will not want to miss as we will have the unique perspectives of both an endocrinologist (Dr. Noa Tal) and a patient (Ms. Haleh Sharafi) on the comorbidities that are associated with this condition and how they have an effect on a patient’s quality of life.

The first blog this fall will be on the topic of Gigantism and Acromegaly: Long term consequences after the disease is “cured”. Diagnosis and treatment are just two parts of a patient’s journey with these pituitary disorders and we will cover the long term consequences that equally need to be considered and managed.

Then in October we will release a vlog on the topic of Thriving during pregnancy and Motherhood with a pituitary disorder. The Maternal Pituitary Support group will share their experience and provide valuable information and support for expectant mothers and mothers living with a pituitary disorder. This will be an enlightening video for anyone interested in maternal health, fetal development and the complexities of hormonal balance for women with a pituitary disorder.

In November, we will publish a blog article on why raising awareness for pituitary disorders is so important. Expect an informative article on why these disorders deserve more attention, how sharing knowledge can literally save lives, and how to spread the word to your community.

Finally to end the year, we will present a vlog that explores acromegaly in a unique way, with the participation of several members of the WAPO patient and medical community. You can access a wealth of information on acromegaly or other pituitary disorders on our website. That is all we will reveal for the moment, but it will definitely be a vlog that is worth the wait.

Now that you’re up to date with our mid-year recap, we hope you are as excited as we are about the upcoming content in the WAPO Blogs and Vlogs series for 2024. We have tried to cover a variety of pituitary disorders and topics that are of interest to our community, but please feel free to send us your feedback.

Finally, as a reminder, this year we also created the WAPO YouTube channel so that our videos could reach a larger audience. If you haven’t already, please subscribe to our channel in order to be the first to see the new vlogs released. We also encourage you to follow us on website WAPO.org as well as our social media accounts, LinkedIn, Facebook, Instagram and X (formerly Twitter), in order to stay up to date with all of our latest news and events. Stay connected to ensure that you don’t miss out on any of the 2024 WAPO Blogs and Vlogs.

Let’s continue to explore and understand the complexities of pituitary disorders and raise awareness among health care professionals and the general public of these rare conditions. It is together that we can work towards improving the lives of people living with a pituitary disorder.  We wish you a happy and healthy summer, filled with relaxation, rejuvenation and inspiration.

 

 

 

Top Tips for Travelling with a Pituitary Disorder

 

With the summer months fast approaching, many of us are starting to think about travel plans. Whether it’s a quick weekend getaway or a longer vacation abroad, exploring new destinations can be an exciting and enriching experience. However, many individuals with a pituitary disorder often limit or avoid travelling after receiving their diagnosis as they feel overwhelmed by the challenges and uncertainties that traveling may entail. This is unfortunate, as travelling with a pituitary disorder is still possible with a little more planning, flexibility and organization.

In this month’s WAPO Blog we will share our top tips for travelling with a pituitary disorder so that you can minimize the stress and maximize the fun on your next vacation.

Choose your destination carefully and prepare yourself for travel

When planning the perfect trip, there are several things to keep in mind. Let’s start with the basics.

First, make sure that the destination and itinerary are adapted to your needs. This includes choosing the best suited mode of transportation.

If travelling by air or train, ensure that you select layovers and connections with sufficient connection times.

Similarly, if you are driving to your destination, make sure to plan breaks (for the bathroom, food/drinks, stretching or resting) into your itinerary and avoid travelling during rush hour to reduce stress. Ideally, it is best to travel with a companion so that the driving responsibility can be shared.

If traveling with friends or family, make sure that they are aware of your pituitary disorder. This will allow you to feel more comfortable about expressing your needs and they can be aware of any symptoms that could indicate an emergency situation and how best to support you.

Do not pack too many sightseeing activities into the same day and schedule time each day where you can take a break at your accommodation, if needed

If you’re traveling abroad, ensure you obtain travel insurance to cover any potential medical expenses in the destination country, should the need arise.

If you’re traveling across several time zones, make sure that you have a plan to adjust your medication schedule in order to avoid missed doses (or having to wake up in the middle of the night to take them). This can be discussed with your endocrinologist, endocrine nurse or general practitioner before leaving.

If you take medication that requires refrigeration, such as growth hormone for growth hormone deficiency, check with your accommodation in advance to ensure that your room is equipped with a mini fridge. When traveling, you can transport them in a small cooler bag. You can also call the transportation company (plane, train or cruise) to notify them of your condition and any needs you may have when booking.

You may also want to search for medical centers familiar with your pituitary disorder in the city where you are going, in case you need medical assistance while you are away from home. For a list of expert centers in Europe that specialize in endocrine diseases, you can take a look on the Orphanet website or check out the list of reference centers of ENDO-ERN.

Contacting a patient organization for your pituitary condition in the country you are visiting may also be a good idea as they may be able to answer more country-specific questions. WAPO’s list of member organizations is a good place to start.

Collect all important documents and medications/medical supplies before leaving

Before packing your bags, make sure to book an appointment with your general practitioner/endocrinologist/endocrine nurse. They will check your health status and you can discuss your trip and any medical essentials you may need, such as:

  • Prescriptions for any medications you take, plus several weeks of extra doses in case of travel delays or other unforeseen events. Patients with adrenal insufficiency should also remember to bring an emergency hydrocortisone injection kit and have it with them at all times. If possible, bring 2 sets of kits: one kept in your carry-on and one in the carry-on of your travel companion (in case of theft).
  • A medication passport and/or letter written by your doctor that explains your condition and the medications you need to take. This is important when going through security with medication or syringes, or in case you need to visit a healthcare professional during your visit. WAPO has International travel letters, available in various languages, which can be downloaded and completed by your doctor.
  • An emergency card (preferably in the local language) is another document that can be useful to have with you when travelling in case of a medical emergency.

Another good idea is to bring important emergency contact information with you, such as:

  • The contact information of your emergency contact person (a friend or family member that you would like to be contacted, in case of emergency).
  • The contact information of your travel insurance provider, in case you are hospitalized or require medical attention.
  • The contact information for your endocrine team in your home country, in case of need.

Finally, visit the Hidden Disabilities Sunflower Network’s website and grab yourself a sunflower lanyard!

Many patients with pituitary disorders have hidden disabilities, meaning that their condition is not visible. This can lead to a lack of support and understanding in certain everyday situations. The Hidden Disabilities Sunflower network was created in order to give people with invisible disabilities a simple way to signal that they may need additional support or patience. There are now businesses from various industries (travel, tourism and retail, among others) all around the world that have joined the Global Sunflower Network and are therefore informed about invisible disabilities and ready to assist anyone in need. For example, you can access a list of airports (and airlines) that are members to see if they are part of the network.

Manage your health and wellbeing during transit

As mentioned above, keep all medication in its original packaging and have it with you (in your carry-on luggage during flights) so that it is easily accessible during transit.

Notify all transportation services of any special accommodations you may need. For long-haul flights, you may wish to ask the cabin crew on your flight to refrigerate your medication for you. For patients with an AVP deficiency, you can let them know that you will need access to water and to the bathroom on a regular basis so that they are aware of this during the flight.

Once on your train/plane, try to relax and rest. Meditation, grounding techniques or listening to calming music can help if you have any anxiety. Stay hydrated during long train/plane rides and make sure to get up and move your legs. You may also wish to bring your own snacks so that you have them available when you need them. Other comfort items such as noise cancelling headphones or a comfortable travel pillow may also help you have a more pleasant experience.

When travelling by car, stay hydrated, maintain a comfortable temperature in the vehicle and take regular breaks along the way.

Once arrived, take time to adjust, keep your schedule flexible and enjoy!

If you have travelled across several time zones, be mindful of jetlag and allow yourself time to adjust to the new time zone and climate (e.g. warmer weather). As many pituitary disorders are also accompanied by fatigue, make sure to allow yourself ample time to rest and take breaks when needed.

Feel free to modify your plans on a daily basis, depending on your energy levels and how you feel. Make sure to monitor your symptoms, as any exacerbations could indicate that you need to adjust the dosage of your medication. At the end of the day, your health comes first and a holiday is supposed to be a relaxing experience, so know your limits and avoid unnecessary stress as much as possible.

Finally, remember to enjoy your experience! Soak up your surroundings, take pictures and, if you like, tag WAPO on social media to let us where in the world you have travelled to.

In conclusion, while travelling with a pituitary disorder may present some unique challenges, it should not deter anyone from exploring the world and enjoying new experiences. We hope that these tips will help you feel more confident the next time you travel. By preparing for your trip in advance, you will be able to focus on what’s really important: making unforgettable memories.

 

 

 Additional resources:

WAPO’s International Travel Letters:
https://www.wapo.org/international-travel-letters/

AdrenalNET Adrenal insufficiency emergency cards:
https://adrenals.eu/emergency-card/international-emergency-cards/

AdrenalNET Guidelines on taking hydrocortisone to prevent an adrenal crisis: https://adrenals.eu/stress-help/

The Pituitary Foundation UK’s AVP Deficiency (Diabetes Insipidus) Awareness Card: https://www.pituitary.org.uk/product/avp-deficiency-diabetes-insipidus-awareness-card/

Hidden disability website: https://hdsunflower.com/

Register for CamRARE’s new Patient Passport (for rare diseases): https://www.camraredisease.org/rare-patient-passport/

Collaborations between Patient Advocacy Groups and Pharmaceutical Companies

Collaborations between Patient Advocacy Groups and Pharmaceutical Companies

The importance of patient involvement in the medicines development process is now widely recognized. The lived experience of patients brings added value at every step of a medicine’s life cycle. Successful and ethical collaborations between patient advocacy groups and pharmaceutical companies are therefore critical for both parties. These collaborations work in various ways to improve healthcare outcomes, promote awareness, and advance research and development.

At the 2023 WAPO Global Summit in Buenos Aires, WAPO board member Clive Deverson ran a very popular workshop on Patient Advocacy Groups’ Interaction with Pharmaceutical Companies. In this month’s blog he will provide examples of how these two groups can work together, but more importantly he will share information and resources covering the restrictions and challenges facing the pharmaceutical industry when it comes to working with patients.

The purpose of this blog will be to:

• Explain why pharmaceutical companies cannot always do what patients or patient advocacy groups wish them to do – the guidelines and codes of practice that govern these collaborations,
• Showcase recent trends in these relationships and activities to inspire the development of your own interactions with pharmaceutical companies,
• Share ‘how to guides’ and toolkits from patient advocacy organizations similar to WAPO.

It should be noted that these patient/industry partnerships can take a variety of forms including funding for patient advocacy groups’ activities, clinical trial collaboration, patient education and awareness, policy advocacy, research and development collaboration, access and affordability initiatives, participation in advisory boards, transparency and communication, and regulatory engagement.

With this wealth of possibilities it is easy to imagine the many opportunities that can result from a successful collaboration between patient advocacy groups and pharmaceutical companies. However, guidelines must be in place to ensure that ethical standards are upheld and that transparency is maintained in all interactions.

Guidelines and Codes of Practice
To start, I will present some of the current guidelines and codes of practice used by the pharmaceutical industry when interacting with patient organizations. As I am based in the UK, I will first share the rules and regulations that apply here.
The Association of the British Pharmaceutical Industry (ABPI) is the trade association for over 120 companies in the UK. They have their own Code of Practice that outlines industry requirements, helping companies adhere to self-regulation principles and operate professionally, ethically, and transparently. They have also developed specific guidance and source book resources to drive the effective partnerships with patients and patient advocacy groups. One of their publications is entitled Working with Patients and Patient Organizations: A Sourcebook for Industry, and its aim is to “help pharmaceutical companies and patient organizations plan how best to engage and work together successfully”.

To help communicate these points more effectively, the ABPI collaborated with National Voices, a UK social care organization, to create the valuable document: Working together, delivering for patients: A guide to collaboration between charities and pharmaceutical companies in the UK. It outlines four main principles for collaboration to be followed by both parties: clarity of purpose (awareness of the planned goals or benefits), integrity (honesty and integrity should be upheld), independence (independence should be maintained) and transparency (disclosure of collaboration purpose and any exchange of funding).

Of course the scope of patient involvement in the research and development process can start as early as establishing research priorities and continues throughout the various evaluation and authorization steps of the regulatory process. The European Medicines Agency (EMA) has actively involved patients in the agency’s activities and these interactions are outlined in a document entitled, Engagement framework: European Medicines Agency and patients, consumers and their organizations.

Trends in patient engagement with industry

In the past 10 years, patient engagement with pharmaceutical companies has increased and, in some cases, patients are being involved at earlier stages of the drug development pipeline. Reducing barriers to patient engagement through the use of new technologies has also increased since the COVID-19 pandemic and has allowed for more collaboration to take place.
There is an excellent publication highlighting recent trends in the fast-evolving patient engagement & patient experience data landscape which has been created by Patient Focused Medicine Development (PFMD), a global collaborative and non-competitive coalition who strives to improve global health by co-designing the future of healthcare for patients WITH patients.

The paper, entitled Highlighting Recent Trends in the Fast-Evolving Patient Engagement & Patient Experience Data Landscape, provides a snapshot of current efforts and approaches that are helping to clarify regulatory and health technology assessment (HTA) expectations of patient engagement (PE) and patient experience data (PXD; evidence which captures the lived experiences of patients through a variety of patient engagement activities) across authorities in North America, Europe and Asia.

The trends outlined in this paper include:

• PE is becoming more prevalent in medicines development,

• The development and use of PXD represents a method to deepen patient engagement,

• PXD is being used increasingly by regulators and HTA bodies to help with decision-making.
Current regulatory and HTA guidance and approaches are being used to help set expectations and drive generation of evidence,

• The need for the definition of requirements is critical in providing patient experience data (e.g. the tools, purpose, users, timing, and impact). This definition will help to expand the development and utilization of patient experience data, thereby increasing its impact when it comes to healthcare decision-making,

• All stakeholders must adjust their procedures to optimize the usefulness of patient experience data and share the insights gained through patient engagement.

Clearly, listening to the patient’s needs and expectations is vital when it comes to increasing patient engagement with the pharmaceutical industry and for improving overall health outcomes.

In a recent publication entitled Co-creating with patients an impact framework across the medicine’s life cycle: a qualitative study exploring patients’ experiences of involvement in and perceptions of impact measures, 13 patient organization representatives were interviewed to give their insights and gather more details on previously defined patient engagement impact measures. The main areas for improvement identified in this study were 1) the need for additional qualitative context, such as patient quotes, satisfaction scores, and patient reported outcomes, 2) the need to define how patients influence the decision-making processes with direct feedback, and 3) the need to ensure that all terminology used is “patient-friendly”.

Another article published in 2023 and entitled Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment: A Global Landscape Review, highlights the need for guidance tools and policies that integrate both PE and PXD in regulatory and HTA processes. Currently, PE and PXD are often used in isolation rather than in combination. PFMD is currently working with multiple stakeholders on the co-creation of a framework for the integration of PE and PXD in regulatory, health technology assessment, and patient-centered healthcare systems.

While there is a growing momentum of including patients in medicines development at all stages, there is still much improvement to be made and policies to be put in place in order to ensure that patients’ valuable insights are used to their full potential.

‘How to’ guides and toolkits for patient organizations wishing to collaborate with pharmaceutical companies

I would now like to share several toolkits and resources that patient organizations can refer to when wishing to collaborate with the pharmaceutical industry.
The International Alliance of Patient Organisations, created the valuable resource entitled Working with Partners and Stakeholders Patients’ Organisation Toolkit. This was designed specifically to support patients organizations develop effective relationships with key stakeholders. It contains information and tools to help understand and overcome the challenges that they sometimes experience when working with external parties.

The European Patients Forum also created a report on the Added Value of Patient Organisations, which provides useful background information to support the positioning of a patient advocacy group.

The European Patients’ Academy on Therapeutic Innovation (EUPATI) offers an online toolbox as well as guideline documents that aim to help integrate patient involvement at all stages of the medicines research and development process with regulatory agencies, health technology assessment (HTA) bodies, ethics committees and the pharmaceutical industry.

Finally, I wanted to share a very practical and informative guide from the Axial Spondyloarthritis International Federation, entitled Working with the Pharmaceutical Industry. This guide covers such topics as how pharmaceutical companies can support your organization, how to connect with a pharmaceutical company, how to establish and build a relationship, the types of support the pharmaceutical companies can provide, the process involved with requesting funding and what to do once you have a grant.

These resources, along with the previous information mentioned, can really provide you with the catalyst to develop your interactions with pharmaceutical companies.

We thank Clive for this informative blog on a topic that is often difficult to navigate for many patient organizations. With these tools and resources we hope that your patient organization will have a better idea of how to initiate and steer meaningful collaboration with pharmaceutical companies. Remember that there are always benefits and challenges that come with these types of collaborations and they must be discussed in a transparent and open manner in order for a meaningful partnership to be established and maintained.

References:

Working with Patients and Patient Organizations: A Sourcebook for Industry;
The Association of the British Pharmaceutical Industry (ABPI).

Working together, delivering for patients: A guide to collaboration between charities and pharmaceutical companies in the UK; National Voices and ABPI

European Medicines Agency (2014) EMA/637573/2014. https://www.ema.europa.eu/en/documents/other/revised-framework-interaction-between-european-medicines-agency-patients-consumers-their_en-1.pdf

Patient Focused Medicines Development (PFMD). Highlighting recent trends in the fast-evolving patient engagement & patient experience data landscape. https://patientengagement.synapseconnect.org/resources/highlighting-recent-trends-in-the-fast-evolving-patient-engagement-patient-experience-data-landscape

International Alliance of Patients’ Organizations. (2011). Working with partners and stakeholders: Patients’ organisation toolkit. London, UK: International Alliance of Patients’ Organizations. https://www.iapo.org.uk/working-partners-and-stakeholders-toolkit

The European Patients Forum (EPF).  Added Value of Patient Organisations

Warner K, See W, Haerry D, Klingmann I, Hunter A and May M (2018) EUPATI Guidance for Patient Involvement in Medicines Research and Development (R&D); Guidance for Pharmaceutical Industry-Led Medicines R&D. Front. Med.5:270. doi: 10.3389/fmed.2018.00270

Gorbenko, O., Cavillon, P., Giles, R.H. et al. Co-creating with patients an impact framework across the medicine’s life cycle: a qualitative study exploring patients’ experiences of involvement in and perceptions of impact measures. Res Involv Engagem 8, 1 (2022). https://doi.org/10.1186/s40900-022-00334-0

Bertelsen, N., Dewulf, L., Ferrè, S. et al. Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment: A Global Landscape Review. Ther Innov Regul Sci 58, 63–78 (2024). https://doi.org/10.1007/s43441-023-00573-7

 

Navigating Nutrition and Pituitary Disorders

The New Year often starts with well intentioned resolutions. One of the most common resolutions involves improving our diet. While maintaining a healthy diet and lifestyle is a good goal for everyone, it is even more important for people with a pituitary disorder who are more susceptible to certain cardiovascular and metabolic complications.

This first WAPO blog of 2024 will cover how nutrition plays a role in the overall wellbeing of patients with pituitary disorders and will explore the intricate relationship that pituitary hormones play in maintaining our health.

The pituitary gland and its hormones

The pituitary gland, often called the “master gland”, is located at the base of the brain and controls several hormone glands by releasing hormones that are responsible for various bodily functions including growth and metabolism, water balance, reproductive health and our response to stress.

A disorder of the pituitary gland leads to either too little or too much of one or more of these important hormones being produced. One of the main causes of pituitary disorders is a pituitary adenoma, which is a benign tumor of the anterior pituitary. If the tumor is “functioning” (secretes hormones) it will lead to an excess of that hormone in the blood. For example, a pituitary adenoma that secretes adrenocorticotropic hormone (ACTH) will cause an increase in ACTH levels in the blood, which in turn stimulate the adrenal glands to produce excessive amounts of cortisol, resulting in Cushing disease. If the pituitary adenoma is “non-functioning” (does not secrete hormones) it may still disrupt the functioning of the pituitary gland and therefore the production of one or more hormones. Hypopituitarism is the term used when the pituitary gland is not producing (or producing only small amounts) one or more of its hormones.

Diet plays a major role in maintaining hormone health, with the food we eat having an impact on our hormones and consequently on the evolution of a pituitary disorder.

Nutritional recommendations for hormonal harmony

Each pituitary disorder is unique; however, there are some common nutritional recommendations that can be followed to ensure optimal health for everyone. Starting with:

  • Eating a healthy, balanced diet with a variety of non-processed foods including:
    • Whole grains for dietary fiber and complex carbohydrates such as brown rice and whole-grain bread;
    • Protein-rich foods (e.g. meat, fish, eggs, dairy or plant-based proteins);
    • healthy fats (found in nuts, seeds, and avocados)
    • Foods rich in essential vitamins and minerals such as calcium (in dairy products, salmon, leafy green vegetables) and vitamin D (in oily fish, egg yolk, fortified cereals) for bone health; iodine (in iodized salt and seafood) to maintain thyroid function; magnesium (avocadoes, seeds and legumes) as it plays a role in modulating the hypothalamic-pituitary-adrenal (HPA) axis; manganese (in nuts and leafy vegetables), as it is important for normal growth and reproduction; potassium (apricots, lentils, potatoes, tomatoes), which plays an essential role in cardiac function and regulates fluid balance, etc.
  • Reducing the amount of foods you consume that are high in refined sugars and sodium
  • Limiting your alcohol intake
  • Making sure to drink enough water (4-6 cups of water a day)

While there is no special diet for patients with a pituitary disorder, those at risk of certain complications related to their disease may benefit from adding or restricting certain foods from their diet. A recent study, for example, showed that a very low-calorie ketogenic diet and a low-carbohydrate ketogenic diet are effective in improving the metabolic and cardiovascular comorbidities seen in Cushing Disease (CD), when combined with conventional CD therapy.

There are several complications which have been associated with pituitary disorders, such as:

  • Obesity

While obesity is a problem in the general population, it is also associated with several endocrine disorders such as hypothyroidism, Cushing’s disease, hypogonadism, and growth hormone deficiency. Increased cortisol levels, as seen in Cushing’s disease, can cause weight gain. Monitoring of calorie intake may therefore be suggested in order to prevent weight gain and obesity. For more information on this topic watch the WAPO presentation Obesity, nutrition and latest insights by Professor Liesbeth van Roosen.

  • Osteoporosis

Osteoporosis is another complication of many pituitary disorders, including hypopituitarism, Cushing disease and acromegaly. Prolonged glucocorticoid use can also lead to reduced intestinal absorption of calcium and is a known cause of secondary osteoporosis. Adequate intake of calcium and vitamin D is therefore essential.

  • Cardiovascular comorbidities

Cardiovascular comorbidities such as hypertension, cardiomyopathy, heart valve disease and arrhythmias are also complications of certain pituitary disorders, such as acromegaly. A heart-healthy diet rich in fruits, vegetables, whole grains, lean proteins, omega-3 fatty acids and low in sodium can help manage blood pressure and may reduce the risk of developing cardiovascular complications.

  • Diabetes:

Diabetes type 1 is another possible complication of several pituitary disorders including acromegaly, prolactinomas, Cushing disease and growth hormone deficiency. Maintaining a healthy weight, keeping active and eating a healthy diet can help regulate blood sugar levels and prevent the onset of diabetes.

Other factors that have an impact on your hormones and overall wellbeing

  • Stress: Stress leads to the release of cortisol (the stress hormone) and chronic stress induces the redistribution of fat to the abdominal region which can counteract your healthy eating habits. Chronic stress is also linked to anxiety and depression as well as other chronic diseases. Try to reduce your stress levels as much as possible by practicing various coping mechanisms and relaxation techniques (e.g. meditation, journaling, etc).
  • Medications: Medications can have an impact on your hormones and your weight. Certain antidepressants, for example, can cause weight gain. Glucocorticoid replacement therapy, used to treat adrenal insufficiency, can also lead to unhealthy weight gain and metabolic perturbations by stimulating appetite and increasing preference for foods high in calories and fat. Talk to your healthcare provider about any side effects that you are experiencing (e.g. significant or unusual weight gain) so that the dosage can be adapted to your needs.
  • Sleep: Sleep deprivation is associated with increased levels of stress hormones, which affect metabolism and can lead to weight gain. Insufficient sleep can also worsen any fatigue you may already have, so aim to get 7 to 8 hours of sleep daily in order to feel well rested and at your best.
  • Physical activity: Regular physical activity helps maintain muscle strength and overall physical and mental health. It is also has anti-inflammatory effects and protects against stress-related disorders. Getting in 30 minutes of physical activity per day, 5 days a week is ideal. What’s most important is to avoid a sedentary lifestyle, so start moving your body with whatever exercise feels comfortable.

Finally, make sure to talk to your endocrinologist/dietician so that they can monitor your hormone levels and give you personalized nutrition tips that are tailored to your pituitary disorder and your individual needs. Everyone is different and maintaining close communication with your team of healthcare professionals is the best way to ensure optimal management and treatment for your condition.

Starting the year off right by eating a healthy and balanced diet may not be an original resolution but through informed decisions and proactive self-care, your unique nutritional roadmap can lead you towards an increased quality of life. And that is something we wish for everyone in 2024.

To learn about the various pituitary disorders, please refer to the WAPO website’s page on pituitary disorders.

 


Sources:

Esteves, Gabriel P et al. “Nutritional recommendations for patients undergoing prolonged glucocorticoid therapy.” Rheumatology advances in practice vol. 6,2 rkac029. 21 Apr. 2022, doi:10.1093/rap/rkac029

Guarnotta V, Amodei R, Di Gaudio F, Giordano C. Nutritional Intervention in Cushing’s Disease: The Ketogenic Diet’s Effects on Metabolic Comorbidities and Adrenal Steroids. Nutrients. 2023 Nov 2;15(21):4647. doi: 10.3390/nu15214647. PMID: 37960300; PMCID: PMC10649442.

https://www.healthline.com/human-body-maps/pituitary-gland

Ylli D, Sidhu S, Parikh T, et al. Endocrine Changes in Obesity. [Updated 2022 Sep 6]. In: Feingold KR, Anawalt B, Blackman MR, et al., editors. Endotext [Internet]. South Dartmouth (MA): MDText.com, Inc.; 2000-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK279053/

Mazziotti G, Frara S, Giustina A. Pituitary Diseases and Bone. Endocr Rev. 2018 Aug 1;39(4):440-488. doi: 10.1210/er.2018-00005. PMID: 29684108.

 

 

 

Report from the 2023 WAPO Global Summit

The WAPO Global Summit is an annual event that brings the members of the WAPO community together. This year the summit took place from October 6-8th, at the Novotel Buenos Aires in the beautiful city of Buenos Aires, Argentina.

The three day event gathered more than 40 attendees, including 22 patient advocates from 19 countries (representing their WAPO member organizations), healthcare professionals and pharmaceutical representatives. Here is the report from the 2023 WAPO Global Summit covering all of the highlights!

Day 1 of the 2023 WAPO Global Summit: Patient advocates in the spotlight

The first day started in the afternoon with a welcome from WAPO board member Clive Deverson. Four different patient advocates and a Nurse then took the stage to talk about their personal experiences as a patient advocate, nurse and their best practices. One of those was WAPO Board Member Robert Brady, who shared his experience as a patient with craniopharyngioma (a non-cancerous tumor of the pituitary gland). As a result of removing the tumor, Robert lives with panhypopituitarism (deficiency of hormones produced by the pituitary gland) and has to take hormone replacement therapy (HRT). He shared how his personal experience with a pituitary disorder pushed him to become involved in patient advocacy as a volunteer for Pituitary Foundation Ireland and the various activities he participates in. Another presentation from this session included Alexandra Huayamave, a nurse from the Guayaquil Specialty Hospital in Ecuador, who shared how they support acromegaly patients.

After a quick coffee break, Sabrina Brignardello took the stage to give her talk on Clinical Trials & Access to Information. Sabrina works for Un Ensayo para Mí, the leading Spanish-language search engine for clinical trials in Latin America. She informed participants on how patients with pituitary disorders can participate in clinical trials and share these opportunities with their patient community in order to advance research. Participating in clinical trials is just one example of why patient organizations are vital to both patients and healthcare professionals.

A final presentation entitled Rediscovering my NGO, by Manuela Pelleri from Soy Paciente in Argentina, took place before the participants gathered for dinner in the conference venue’s dining room. This was the first opportunity for patient advocates as well as the various speakers and representatives from the pharmaceutical companies present to connect (or reconnect) and share ideas for the future. Many were familiar faces but first-time attendees had a chance to mingle and share their journeys with other patient advocates.

Day 2 of the 2023 WAPO Global Summit: Focus on diagnosis and care of pituitary disorders

Saturday morning kicked off with an informative presentation from Dr. Alvaro Campero, a neurosurgeon from Hospital Ángel C. Padilla in Tucumán, Argentina, on the topic of How do patients find the right place for treatment? This presentation highlighted the importance of educating all healthcare professionals on pituitary disorders so that patients can quickly be referred to an expert center for diagnosis as well as proper management and treatment of their condition.

After a quick coffee break, Dr. Chris Yedinak, who is an associate Professor at the Oregon Health & Science University in Portland, USA, gave a very comprehensive overview of growth hormone deficiency in adults and children. Participants learned the definition as well as the signs and symptoms of growth hormone deficiency. The causes of a growth hormone deficiency, meaning that the body produces insufficient amounts of growth hormone, were also discussed as well as the treatment.

Dr. Alvaro Campero then returned for a presentation on the evolution of pituitary surgery and current state of the art in the surgical treatment of pituitary tumors. This very educational session left participants with a greater understanding of the latest surgical techniques (and their benefits) for the treatment of pituitary tumors.

The 2023 WAPO Global Summit continued after lunch with an exciting presentation by Els Rutten, an endocrine Nurse from Gent Hospital in Belgium. As an endocrine nurse specializing in acromegaly and Cushing’s, Els set up a home education program for acromegaly patients in Belgium. It involves her travelling to the patient’s home in order to educate them on their condition and how to properly administer their treatment. Patients with acromegaly are often started on hormone replacement therapy (HRT) without many instructions or support. They may receive some explanations from a nurse at the time of their diagnosis, but others are left to figure it out on their own. Els shared several stories from patients who she had visited and described how it increased their satisfaction in the care received. All agreed that this sort of program would be beneficial to acromegaly patients everywhere and should be extended to other countries

Following a quick break for a group photo, the final panel session commenced with Clive Deverson talking about the rules and regulations followed by pharmaceutical companies wishing to interact with patient organizations and how successful patient-industry collaborations are formed.

Then Gretchen Jordan from The Cushing’s Support and Research Foundation (CSRF) gave an update on the Global Quality of Life Survey conducted by CSFR and supported by WAPO, which asked questions about diagnosis, treatment and quality of life of patients living with Cushing’s. She mentioned how participation increased once it was shared with 10 patient support groups on Facebook, showcasing the power of these private online support groups. The results from this survey will be published soon.

Chris Yedinak (US) and Els Rutten (Belgium) then spoke about the role of nurses in patient support. Finally, Robert Brady gave patient advocates his latest communication tips and tools to help reach more people via patient organization social media channels. It was a great way to end the first two days of the summit and participants.

Day 3 of the 2023 WAPO Global Summit: General Meeting and Training Program for Nurses

On Sunday morning the WAPO board and patient advocates from WAPO member organizations met for the WAPO Annual General Meeting. This interactive meeting was the opportunity for all patient advocates to discuss the accomplishments of 2023 and to go over the action plan for 2024.

At the same time as the WAPO General Meeting, the Training Program for Nurses took place, taught by Chris Yedinak. Five nurses from Argentina (including one sponsored by the Federation of International Nurses in Endocrinology (FINE)) had the chance to learn about nursing practices specific to pituitary disorders. Topics covered hormone physiology, prolactin and its link to infertility in both men and women and the importance of growth hormone. Each nurse left the training with a certificate of completion and new knowledge and skills that they can use in their daily practice. We hope to offer this training again in the future.

We would like to send a big thank you to our amazing sponsors: Recordati Rare Diseases and Ipsen (Gold Sponsors); HRA Pharma, Novo Nordisk and Crinetics Pharmaceutical (silver sponsors); and Ascendis Pharma (bronze sponsor).

Thank you also to the Federation of International Nurses in Endocrinology (FINE) who sponsored one nurse to attend the WAPO Summit Program.

Finally we would like to thank those who helped make the event run so smoothly with their organizational and interpretation support: CVENT Events (who designed the event’s website and mobile application), El Cuore, Officinia Linguistica interpretariato & Traduzione and Patricia Vega Cervino conference interpreters (who allowed for simultaneous English/Spanish translations of the presentations) as well as DlC Audiovisuales, who are currently  working on the presentations so that they can be shared on the WAPO website/Library.

Overall, the 2023 WAPO Global Summit was a huge success and we would like to thank everyone who attended or who made this important event possible. We can’t wait to see everyone again at next year’s WAPO Global Summit!

The presentations from the summit will soon be available on the WAPO website so stay tuned to our social media accounts so you don’t miss the announcement.

 

 

8 webinars to watch this Pituitary Awareness Month

October marks Pituitary Awareness Month, which is a great occasion to raise awareness and share information about pituitary disorders. One of the best ways to learn is by watching educational videos, so this blog article will focus on the 8 WAPO webinars to watch this Pituitary Awareness Month.

The WAPO webinar series has been designed by WAPO and is based on the most recent trends and topics of relevance expressed by the global patient community. Speakers are selected based on their expertise, their awareness of the value of patient engagement and their interest in improving access to medical information. All webinars are available in both English and in Spanish.
Here are the 8 WAPO webinars of 2023 that delve into a topic related to pituitary disorders and that can be shared with your community for Pituitary Awareness month.

1) Cushing syndrome – a cursory look into the past with Dr. Lewis S. Blevins, an endocrinologist and Director at the California Center for Pituitary Disorders in California, USA.

This webinar gives an excellent overview of hypercortisolism, a clinical state caused by excessive tissue exposure to cortisol and/or other related glucocorticoids, and the resulting Cushing syndrome. He starts by presenting the first identified cases of Cushing syndrome then goes on to share the diagnostic tests and diagnostic imaging techniques used throughout the years. This is followed by a history of the treatments of hypercortisolism, covering the surgical techniques (e.g. adrenalectomy), the medical therapies and the radiotherapy techniques.
Why you should watch this webinar: The medical advances made since the description of the first suspected case of Cushing syndrome in 1912 by Harvey Cushing until today are remarkable and very encouraging.

2) Health Technology Assessment, with Lindsey Weaver and Josie Godfrey from Realise Advocacy in the UK.

This webinar covers the step of the drug development process known as Health Technology Assessment (HTA), which is conducted to inform healthcare decision-makers about the potential benefits, risks, and cost-effectiveness of a medication. Patient involvement in this process is vital as they can share their unique insight in regards to their disease and what they wish to see in a treatment, all of which leads to better decision making. The webinar also covers how patient organizations can effectively participate in the HTA process in order to strengthen the impact of patient involvement.
Why you should watch this webinar: the importance of patient participation in HTA is becoming more and more evident and this webinar can give patient advocates and organizations a good starting point on how to navigate this often complicated process.

3) Mental Health and Acceptance after a diagnosis with Ignas Meskauskas, health and life couch and founder of Practical Wellness from Amsterdam, the Netherlands.

In this webinar, Ignas talks about the shock, doubt about the future, and uncertainty that patients receiving a new diagnosis of a pituitary disorder are all too familiar with. It also gives patients a roadmap on how to change their thoughts, behaviors and habits in order to change their experience with a pituitary disease.
Why you should watch this webinar: Ignas insists that a diagnosis shouldn’t define you and gives concrete actions that patients can follow in order to improve their quality of life.

4) Pain and Stress in Pituitary Diseases with Emilio Covarrubias, a physical therapist and acupuncturist, from Chile.

This webinar defines what stress is, how it is measured, the effect that acute and chronic stress can have on the body and the relationship between stress and pain. He then explains how the natural physiological responses to stress are damaged in patients with pituitary diseases and why it is therefore so important to manage stress in order to prevent further damage and complications.
Why you should watch this webinar: Stress is unavoidable but chronic stress is damaging to everyone, in particular patients with pituitary disorders. This webinar gives useful tips on how to better manage stress.

5) Depression and the Pituitary Patient with Linda Rio, a marriage and family therapist from California, USA.

In this webinar Linda gives a comprehensive overview of depression, including how to distinguish depression from apathy and how depression intercepts with endocrine disorders. She underlines how depression affects pituitary patients and their families and provides tips of how to support someone with depression.
Why you should watch this webinar: World Mental Health day is October 10th and patients with rare diseases, which include many pituitary disorders, have higher levels of depression than the general public. It is therefore very important to understand the unique challenges faced by patients with a pituitary disorder and their families in order to offer specialized support.

6) Clinical Trials with Dr. Alberto Pedroncelli, Chief Medical Officer at Camurus.

Dr. Pedroncelli, who is a leading expert in clinical development and medical affairs within the field of endocrinology and oncology, gives an overview of the different types of trials, the various steps of a clinical trial (from bench to bedside) and the special adaptations that have been made for rare diseases. This webinar will be released on the WAPO website on September 28th, 2023.
Why you should watch this webinar: Clinical trials are a crucial step in the process of drug development. Having knowledge of the basics of clinical trials is the first step in ensuring patient engagement and involvement, which benefits not only patients but also researchers and the industry.


7) Transition from pediatric care to adult care: we mind your step with Kirsten Davidse, a nursing specialist from Erasmus University Medical Center in Rotterdam, the Netherlands.

This webinar will give an overview of the preparation and planning involved in a successful transfer of care of an adolescent patient from a child-centered to an adult-oriented healthcare system. This webinar will be released on the WAPO website on October 26th, 2023.

Why you should watch this webinar: This is a very important phase in a patient’s life that needs to be properly planned and supported in order to ensure that the complexities of pituitary disorders are properly handled and that there is a continuity of care.

8) Finally, the last webinar of the year will be entitled Growth Hormones in Adults & Children with Dr. Christine Yedinak, a family nurse practitioner from Oregon Health and Science University, in Portland, USA. It will be released November 30, 2023 and you can expect a comprehensive review of this important topic.

We hope that you will watch one or more of our webinars this Pituitary Awareness Month. Take the time to learn about pituitary disorders, share WAPO resources with your friends, family and your general practitioner and raise awareness in any way that you can for these endocrine disorders. When pituitary disorders are quickly recognized by healthcare professionals, patients can receive a diagnosis and specialized treatment in a timely manner. And we all know that early diagnosis and treatment leads to better patient outcomes.

While we aim to raise awareness for all pituitary disorders in October, Pituitary Awareness Month 2023 is shining a spotlight on prolactinomas. Prolactinomas are prolactin-secreting tumors of the pituitary gland. If you would like more information about this specific condition, WAPO has a dedicated page with valuable information on this rare disease. Another page of the WAPO website provides a list of pituitary disorders for you to explore.
By participating in Pituitary Awareness Day you are showing your support to all patients with a pituitary disorder.
Find a list of all the WAPO webinars (including webinars from previous years), in the WAPO library here: https://www.wapo.org/library/?_library_category=webinar

Sources:
Juggling care and daily life: The balancing act of the rare disease community. A Rare Barometer survey. May 2017.
Economist Impact: Connecting the Dots: Embedding Progress on Rare Disease into Healthcare. 2022
Sbardella E, Pozza C, Isidori AM, Grossman AB. ENDOCRINOLOGY AND ADOLESCENCE: Dealing with transition in young patients with pituitary disorders. Eur J Endocrinol. 2019;181(4):R155-R171. doi:10.1530/EJE-19-0298

Why patient organizations are vital to both patients and healthcare professionals

“Guest post by Natasha Barr – Caretently Health Communications, upon invitation by WAPO”

 

Being diagnosed with a pituitary disorder has a huge impact on a person’s life. The fact that many pituitary disorders are equally rare diseases only adds to the feeling of isolation that many patients may experience. Patient organizations aim to break that isolation by providing invaluable support, however, their role goes far beyond this one mission. Patient organizations provide a variety of valuable services to both patients and healthcare professionals and play a significant role in improving patient management and care.

This article covers the importance of patient organizations and the patient advocates that represent them.

Pituitary disorders are a group of disorders affecting the pituitary gland. This “master gland”, located at the base of the brain, makes important hormones that act on other glands and play a role in many vital functions such as growth, development, sexual maturation, reproduction, blood pressure control and metabolism. Pituitary disorders can have many causes (most commonly benign tumors) but they result in patients making too much or too little of these various hormones, leading to a large variety of symptoms and requiring multidisciplinary lifelong care. A patient organization is therefore a valuable partner to patients throughout their patient journey.

Patient organizations are first and foremost for the patients and their carers. The European Medicine’s Agency defines them as “not-for-profit organizations which are patient focused, and where patients and/or carers (the latter when patients are unable to represent themselves) represent a majority of members in governing bodies”. With that now clarified, let’s take a look at how these passionate patient advocate groups make a difference.                                   

Many patient organizations offer dedicated support groups. Whether they are in person (e.g. via local meet-ups) or online (e.g. via Facebook groups), they are a much needed safe space for patients looking for information, guidance and support. Speaking and connecting with others living with the same condition is highly beneficial to patients and their families. These groups can lead to new friendships and give patients a much needed feeling of community. An example is the Ireland Pituitary Support group on Facebook, which has over 300 active members. Keep in mind that when it comes to Facebook groups, it is always a good idea to check if the group is moderated by a member of a recognized patient organization. This ensures that a set of community rules will be enforced and no misinformation will be shared.

Another role of patient organizations is one of raising awareness. As pituitary diseases are relatively unknown and can often present with non-specific symptoms, patients may wait years before receiving an accurate diagnosis. This delay in diagnosis leads to a delay in treatment and an increased risk of complications and a decreased quality of life. Patient organizations try to raise awareness for their rare disease(s) so that the medical community and the general public are more aware of the symptoms and warning signs. Awareness days, where information is shared on social media accounts, or public outreach campaigns, which aim to reach the masses and spread knowledge are both actions initiated by patient groups. Some great examples from the pituitary disease community include Acromegaly Awareness Day on November 1st and Cushing’s Awareness Day on April 8th.

Patient organizations produce educational resources on the diseases they cover that are scientifically validated by medical experts. If you type the name of a disease in Google, anything can pop up! This can lead to unnecessary distress and confusion. However, resources produced by a recognized patient organization can be trusted. They usually have a medical advisory board or collaborate with medical experts in order to produce accurate and comprehensive information on a given health topic. This information is also presented in a language that is easy to understand (i.e layman’s terms) and in the local language. WAPO, for example, has produced webinars on a variety of topics including depression in the pituitary patient, pain and stress in pituitary diseases and many more, which can be found in the WAPO library. There is also educational information on the various types of pituitary disorders on the website.

In addition to what they bring to the lives of patients, patient organizations collaborate with and help healthcare professionals.                                             

Patient organizations can provide healthcare professionals with a roadmap for how to engage with patients in order to improve patient-clinician relations. They bring both the patients’ and their carers’ perspective to the table and provide insights that clinicians may not automatically consider. They may offer helpful suggestions, such as encouraging the patient to bring a family member or friend with them into the consultation. This allows for patients to have someone else listening and noting down the important facts given by the doctor, as one can often feel overwhelmed and forget what was said during the initial consultations. They stress the importance of showing empathy and truly listening to the patients and their needs. These tips can lead to a more trusting relationship between patients and clinicians.

                                       

They can also provide healthcare professionals with educational material for their patients. As mentioned above, the informative resources produced by the patient organization and validated by the healthcare professionals can be used directly by the healthcare provider. They can then be given to patients at the time of diagnosis so that they have written information to take home with them. They can provide expert centers with posters for their waiting area or flyers which can be given to patients at the end of their consultations.

Having a patient organization for a disease or group of diseases allows clinicians to refer their patients to these groups for support along their patient journey. Knowing that a patient organization exists for their disease reassures the patient that they are not alone. The patient organization can ensure that all of their questions are answered once they have had time to digest everything. Having a full understanding of the disease makes a patient more likely to adhere to a treatment protocol and to recognize signs of any life-threatening complications.

They can equally support research by informing patients of new research studies or clinical trials and by helping healthcare professionals find enough patients to participate in these studies. As the majority of pituitary disorders are rare diseases, research is often limited by insufficient patient numbers. By finding and reaching out to new patients, patient organizations can keep them up to date of new studies and clinical trials so that they can participate if they wish. They may even provide research grants to teams investigating new therapies for their disease. Setting up registries with healthcare professionals so that patients can be found for research purposes is another possible activity. Patient advocates are equally solicited during the development process of new treatments. One thing is for sure: without the participation of patient groups, research cannot advance.

Patient organizations partner with clinicians when creating Patient Reported Outcome Measures (PROMs), which are a set of measures used to assess care delivery and treatment efficacy. These measures should reflect the patients’ desired outcomes, so it is vital to have them involved. This was the case when the PROMs for patients undergoing transsphenoidal surgery for a pituitary adenoma were created. They were developed with the input of patient advocates from the Pituitary Foundation.

An equally important activity is strengthening the relationships between patient advocates and healthcare professionals via meetings or congresses. Healthcare professionals can share their latest research and patient advocates can ask the burning questions of the patient community they represent. Patient organizations often organize these types of multi-stakeholder meetings, which are highly beneficial to all that attend. The upcoming WAPO Global Summit 2023, which will take place in Buenos Aires, Argentina from October 6-8th, 2023, is a prime example of an event that allows for patient advocates from member organizations to come together and share best practices while also learning about the latest medical developments by top experts in the field of pituitary disorders.

Finally, let’s not forget that patient advocacy efforts are at the root of social change in the healthcare system. Patient organizations have an active role in driving change. Some great examples in the field of rare diseases include the various national rare disease plans (such as the national plan for rare diseases, or PNMR, in France which was created in 2004 and which has been renewed twice since), the launch of the European Reference Networks (and their European Patient Advocacy Groups or ePAGs) in 2017 and the first UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families, which was passed in 2021. All are a direct result of the active participation of patient organizations and alliances fighting to improve the lives of rare disease patients.

So let’s remember all the valuable work that patient organizations and their patient advocates do every day. If you can, show them your support through volunteering, donating or sharing the news about their activities. They give their valuable time to support others in addition to dealing with their own chronic disease and its daily challenges. Together with healthcare professionals and all other stakeholders, patient organizations work to support and educate, eliminate barriers to care, promote health equity, and drive systemic changes that benefit all of society.

To see a list of WAPO’s member organizations, take a look at our member page here: https://www.wapo.org/overview-of-member-organizations/

 

Sources:

Cortial L, Nguyen C, Julkowska D, Cocqueel-Tiran F, Moliner AM, Blin O, Trentesaux V. Managing rare diseases: examples of national approaches in Europe, North America and East Asia. Rare Disease and Orphan Drugs Journal. 2022; 1(2): 10. http://dx.doi.org/10.20517/rdodj.2022.02 https://rdodjournal.com/article/view/4893

Karvandi, Elika et al. “A patient-reported outcome measure for patients with pituitary adenoma undergoing transsphenoidal surgery.” Pituitary vol. 25,4 (2022): 673-683. doi:10.1007/s11102-022-01251-x https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9345822/

https://www.ema.europa.eu/en/documents/regulatory-procedural-guideline/criteria-be-fulfilled-patient-consumer-healthcare-professional-organisations-involved-european_en.pdf

Ireland Pituitary Support: www.pituitaryireland.ie

https://www.eurordis.org/our-priorities/european-reference-networks/epag/

https://www.rarediseasesinternational.org/wp-content/uploads/2022/01/Final-UN-Text-UN-Resolution-on-Persons-Living-with-a-Rare-Disease-and-their-Families.pdf