Support groups for rare diseases
Hi
I've just returned from france and have been diagnosed with a rare connective disorder called Ehlers-Danlos syndrome.It's quite similar to Marfans Syndrome, was wondering if anyone here has a similar type of health problem and if so did they fancy meeting up? Or if anyone has any advice on good doctors, occupationa therapists etc?
thanks for reading
hi there.
although i dont know your illness but i share your concern and emotions becasue i deal emotionally with a differnt type of health problem.
sadly here, we dont have any support groups and we have to rely upon individuals (if you know them) or web support to get relief and advise.
if you wish to interact pls PM me, i do wish you good health. i would like to think that I have a fair idea of what you might be feeling.
take care.
happy heart
DRIVE SAFE,someone is waiting for you at home
sorry to hear, I pray for your hale and healthy life. May almighty allah bless you to recover soon.
Hi thanks for answering anyway and your kind words!
Have no idea and wish I can be of any help.
Wishing you complete cure.