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ANA positive result/rare patterns
Autoimmune Diseases | Last Active: Jul 17 8:57am | Replies (15)Comment receiving replies
My first cousin had to have heart surgery b/c of EDanlos - I had “growing pains” as a kid after a physically busy day but no body else had growing pains. I’ve had the gastro issues, spine issues, heart issues and I can still be hyper flexible. However I’ve read there is no cure?
So what’s the point of getting more tears? And are you seeing someone at Mayo in Jacksonville or Rochester? At least please keep us informed as to what the new recommended treatment is b/c my daughter also has it & was diagnosed years before !
Thank you
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You are so welcome! This is all new to me, even though I’ve been a nurse for so long. This is something that is overlooked by many. I’ve had “issues” my entire life and just dealt with whatever was going on, at the time. I just didn’t know WHY I always had some type of complication. It’s just recently that I’ve been getting worse, and reviewing my kids’ history and current issues that I started doing a little research and working with my doctors. Yes, there is no cure, and EDS is different for every one. There are 13 types. Treating the symptoms is easier if you know what the problem stems from. I have not gone to Mayo, as it is difficult to travel right now. I have an appointment with a local spine doctor, tomorrow. I do have appointments at Vanderbilt in December and January for Cardiology and Genetic testing. The Ehlers-Danlos Society site has a lot aaof good information and I’m registered for the Global Conference, this July 17-21. (Attending virtually).
Also, I highly recommend the book, “Disjointed”. My son (28), had/has less issues than my twin girls (26). It tends to be more prevalent in girls. Good luck with your daughter! 🙏🏻❤️