Anyone with Ehlers-Danlos Syndrome who had radiation

have2laugh

I am curious to know if anyone who has undergone radiation also has Ehlers-Danlos Syndrome. Our pediatrician is referring our five year old for additional testing for this connective tissue disorder based on hypermobility in multiple joints. I am also "double jointed" in few places, never realized this could be an issue but I had severe cardiac issues with this last pregnancy and difficult time with radiation. Reading on EDS and genetic link it's making me think-probably overthink- few things.Going to get little one started on physical therapy and try not to stress too much until we see orthopedic specialist in few weeks and geneticist in July but I'm curious if anyone with EDS has had radiation and how it went. Thank you for sharing

Kar324

That is a great question. Hypermobility syndromes and collagen disease are from, the tone of research, I've obsessed over, are relative contraindications but not absolute. I have systemic lupus and my RO is aware. I have a mild case of it, and I have fared surprisingly well at this point in time. I do take NSAIDS as a precaution before and after treatments. I believe scleroderma, pregnancy and severe cardiac issues, as well as prior radiation to the same area are absolute contraindications. Have you discussed this with your RO? Or perhaps a rheumatologist?

have2laugh

Thanks for you reply. I was cleared for rads by cardio but had difficult time-one area took six months to heal and surgeon felt I had radiation recall three months later though I'm not so sure this wasn't just start of lymph edema. Will wait to hear from geneticist on little one but I have some cornea issues and doctors have mentioned possibility of connective tissue disorder and older daughter has had several autoimmune issues-lupus was ruled out- but tests indicated an unspecified connective tissue disorder they couldn't id at that time. These types of issues can have such general symptomology could all be coincidence but when I heard the term connective tissue disorder again it just seemed odd. Will see what geneticist and not stressing about it.

Blessings2011

have2laugh - I believe I have EDS/Hypermobility Variation, undiagnosed. No, I didn't have rads.

I just wanted to tell you that a dear friend has a very severe form of EDS, and yes - it can affect all the systems in the body, regardless of the variation.

She also has three young daughters with EDS, and while they have had way more than their share of doctor visits, they are wonderful, bright, happy young girls.

She got them hooked up with several organizations in their community, and they have been able to participate in some amazing adventures.

Wishing you and your 5 year old the very best....