The Challenges of Living with a Rare Type of EDS - Dr. Serwet Demirdas

Dr. Demirdas is a clinical geneticist at the Erasmus Medical Center in Rotterdam, The Netherlands, who has several publications concerning classical-like Ehlers-Danlos syndrome (clEDS) and other types of Ehlers-Danlos syndromes (EDS).
In her clinical practice, she sees many patients with different types of EDS while working together with several disciplines through an established clinical pathway within the Erasmus Medical Center. The professionals involved in the clinical pathway have received the qualification of “Center of Expertise” within the Netherlands.
Dr. Demirdas is also part of the International Consortium on EDS and HSD and takes part in the working group for the rarer EDS types. She coordinates the research for clEDS and vEDS in the Netherlands and is working closely with medical professionals in the Netherlands, the UK, Belgium, and France.
In this session, Dr. Dermidas talks about The Challenges of Living with a Rare Type of EDS.

[@vanessabuchanan4691]

I have a rare polymorphic mutation in Aebp1 associated with classic type 2 subtype and Aortic Aneurysm only seen once before. I also have a rare ZNF469 mutation seen in Brittle Cornea never seen before. It is likely to be disruptive.

[@shannongreenwell1278]

I have EDS/ Classical subtype. It took me turning 48 years of age to learn about it. I got Dx by my Neurologist. My biggest challenge is pain and subluxation and Migraines, Dysautonomia.

[@tes-sr6zh]

​@@sharonkaysummerford2099 why in the world are you being given Tylenol of all the drugs out there? Your kidneys hun