The Marfan Foundation 2022

The Marfan Foundation is a nonprofit organization that saves and improves lives while creating a community for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes.
To learn more, please visit Marfan.org.
To support our life-saving work, please visit Marfan.org/donate

[@mnchnn]

Unfortunately support in the United Kingdom is extremely lacking

[@pascalswager9100]

Same in Australia. I mean the heart team has done two aortic replacements on Me and saved My life, I mean the day to day stuff, back problems, nerve issues, joint issues etc. A nerve conduction test alone costs over $1000 so I couldn't afford it. The neuropathic pain alone makes standing for more than 10 minutes impossible, My left leg just buckles under Me. Pain in My tailbone is so intense, the only relief is to lie flat. Even the marfans specialist doesn't have answers for these things and I'm all about quality of life.

[@mnchnn]

@@pascalswager9100 all we can do is educate friends and family around us and hopefully as more and more people learn, suffering can at least be acknowledged. The biggest issues are medical staff either ignoring or thinking the symptoms are "functional" aka faked and disability discrimination.
Hang in there. I acknowledge your pain and I know it is very real and unfortunately there is no cure. You are not alone

[@pascalswager9100]

@@mnchnn My Brother and 2/3 of My Children have marfans, they understand especially My Brother who is 37, I'm 4o. I'm sure everyone else just thinks Me lazy, chronic pain is hard! Thanks for Your lovely kind words, take care mate ❤