Hi everyone. I wonder if you can help?
After my own research has lead me to believing I have a vascular form of EDS, (or a chance it could be a form of vasculitis or both?) due to my past medical history and chronic symptoms. I now urgently need a diagnosis (as do we all!) This is to know if my son could be affected .But I have read a genetic testing can take many months.
The urgency is because my son who has had a diagnosis of ME for eleven years, is due to have surgery in May 2017,and he suffers with many of the symptoms I suffer with. So I would like to know for sure if we are both affected with EDS, and then he can have this information to give the team who will perform the op and do the after care.
I am not quite sure what to do or where to go. I am due to see rheumatologist for a follow-up appointment (specialising in connective tissue disorders) hopefully to get 'the right answers'. Tests on last visit were aimed mainly at the nerve problems I suffer with. Although a physical examination regarding EDS performed, it was not mentioned, and I myself had no knowledge of EDS six months ago.
I am very worried about my son undergoing surgery for fear of complications should he have any form of EDS. I dont know everything about EDS and so I dont know how to safeguard against any complication, but I have read somewhere that there is greater risk when undergoing surgery? After eleven years, I do know about ME, and I have all the information to give about anaesthetic safety to prevent muscle paralysis.
If anyone has any information that could help me, I would truly appreciate it.
Thank you so much, and very best wishes x