My name is Muriël Marks and I am living in The Netherlands with my husband Frank, our 3 adult children and our Rhodesian Ridgeback Nena.
For many years I have been suffering from a plentitude of undiagnosed complaints. I had to visit a series of specialists, before I was diagnosed with Cushing’s (pituitary). Unfortunately ‘Plan A’ – pituitary surgery – was not a success. The symptoms remained. After weighing all the pro’s and con’s – with my endocrinologist – ‘Plan B’ was to remove both my adrenal glands. As a result, I now am a ‘primary adrenal insufficiency’ patient, also known as ‘Addison’s Disease’. And as such dependent on hydrocortisone and fludrocortisone. Therefore, my interest is for both the pituitary patient and the adrenal patient.
I joined the predecessor of WAPO – the Novartis’ patient advocates meetings – in 2013 as representative of the Dutch Adrenal Society NVACP.
In 2015 I became one of the founders of WAPO. Currently I am a member of the WAPO Board of Directors and active as an Executive Director. Besides this, I am also involved in fund raising, finances, projects and organizing the WAPO (e)Summits. My background as a secretary helps me to organize and support the WAPO community.
My goals are: “Raise awareness, improve attention for good treatment, support to patient advocates and patients, especially in regions where this is not yet well-developed!”