Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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Kidney Stones and EDS

bulldog
bulldog

My daughter has EDS. She also has chronic kidney stones and passes about one every 6 weeks. She has low citrate in her urine which has taken 17 years to find this out ughhhh. She is on a supplement which is helping and drinks lots of lemon aide. Has anyone out there with EDS experienced the same problems. 

Purplezebra
Purplezebra
I actually have EDS, and have had chronic kidney stones for 15 years.
I just found out recently I have low citrate as well. I'm constantly putting lemon in my water as well, but we have yet to find anything that will successfully stop them.
I wish you the best of luck in finding something.. and if you do please let me know!
bulldog
bulldog
Purplezebra omg. Thank you for posting. So now we know there is at least one other person out there that is experiencing the same issue. You have, if anything made us feel we are not alone. I have always thought they are related for some reason but never got anyone who cares or has come across this. What have your doctors said. My daughter takes citrate a supplement and does the lemon thing. Her citrate while on the supplement was as low as 46 and I think the normal range is 400 something. So something is making this happen. Please keep me posted and I will you as well. Thanks so much for sharing.
bulldog
bulldog
Ps. Not trying to get to personal but my daughter has not been able to work with the amount of time we spend at hospitals/in bed. We got denied disability have you been able to work? She's so young and now is 18 so we are going to try again. My goal is to be able to just get her through college