Ehlers Danlos Syndrome and access to necessary health care

More needs to be done ...

As an EDSer whose neck is slowly but surely deteriorating, it is a terrifying prospect to be without care. I have no access to proper diagnostics, or treatment of any kind. No one can tell me what's happening to my neck, what I need to do to avoid surgery, or if surgery is inevitable. I need care here. And I'm not the only one. Help us.

I have eds. No Doctor knows what it is in my small town. Something needs to be done!

EDS is just starting to get the recognition it needs! Please continue to give us access to necessary help!

do the right thing.

My cousin Adena Gutstein has always been one of the strongest most capable people in the world. She got through medical school and became an emergency doctor WHILE competing in varsity rowing and she's been an avid mountain biker for years and she did a bunch of other sports I can barely recall because she always made time to be an awesome cousin. Watching EDS strip her of her amazing competency was heartbreaking for everyone in my family. But knowing that people like her, people INCLUDING her, have been denied medically necessary surgery is worse. She deserves the chance to heal, as do the many other Canadians suffering from EDS.

Please support the EDS community.

My daughter has this condition as well as other co-morbid conditions. It is frightening for her, it is frightening for her husband who is in last stage kidney failure because of diabetes. My son died 6 years ago, Ariel is all I have, we need her to get the help she requires, it has been an uphill battle for her.

I suffer from EDS as well and the struggle to get help has been immensely difficult. Please let our voices be heard.

I have Ehlers-Danlos Syndrome and trying to get help for us is almost impossible.There are a lot of us who are suffering and are forced to live out a painful, miserable existence. We are all crying out for help. Thank you <3

I agree more needs to be done

It is about time that the government backed up its obligation to provide proper health care to those affected by EDS!!

EDS is seriously impacting several family members. Please heed this petition and take the steps necessary for accessing appropriate health care.

As a parent with a child that has EDS I have enormous concerns. It is sad that our health system is so behind in ordering care for these patients. I can't by the life of me understand why family doctors or specialists are unaware of this disease or attempt to attend any conferences to do with the disease to be more aware and informative therefore to better diagnose and assist these patients not to mention the funding in order for these patients to survive or have some quality of life. Iam sad and discouraged and discussed at what my family is dealing with!!!!!

I have EDS hypermobility type. This system is broken! We need more specially trained Dr's/surgeons here! Especially neurosurgeons/neurologists I have not been able to see one since they found and I have fluid in my optic nerves and neck issues that affect my vision. This is not ok! There are too many people that need life saving/altering surgeries. Stop making them wait!

I too have EDS and would want the care that I need . WE need more doctors that can and will provide the life saving treatments.. Some of us can't afford to go out of country and or are not medically stable enough to travel to get the care needed. Please help us We need treatment and proper care!