Ehlers Danlos Syndrome and access to necessary health care

Those with EDS deserve a chance at quality of life. More needs to be done to educate the medical community, government and public about this not-so-rare disease. The time is now!

I want to contribute to society and my immediate community, I love working and the cost of keeping me down is economically nonsensical and socially negligible. Thank you for bringing up the fiscal irresponsibility of the current strategy.

BOh my daughter and I have been diagnosed with EDS. My daughter has Chiari Malformation. This health care issue is very important to us.

It is bad enough we are fighting for our lives, disgusting that we have to fight the government for them.

Please help!

As a woman living with EDS in Ontario, I have little hope for my future. At 37 I am existing on Ontario disability support and am unable to work due to lack of knowledgeable surgeons in our Country. Once senior management in Non for profit arts and culture, I know spend my days riddled with pain and isolated. This has to change. I want to say more but am not able to at the moment. As a Canadian citizen, I feel painfully and systemically marginalized.

Shouldn't the medical system try to treat any patient no matter what their malady? With millions of people in Ontario even a problem with a statistically low probability of occurring is going to turn up.

This needs to be addressed urgently

Please act in the best interests of the patients, your citizens and voters. The longer term costs of ignoring the issue will only cost more in the end.

It is time that patients in Canada with rare diseases, like EDS, be treated with dignity and receive the life saving treatments they are in dire need of. Having watched my sister struggle with horrific complications of EDS, being shuffled from one unknowledgeable doctor to another, I have seen first hand how this system approaches the challenge of dealing with someone with a rare disease. The system and most of the doctors within that system choose to ignore it. I am appalled by the dehumanizing way in which patients with rare disease are treated. Many (most) of these patients have been turned away by doctor after doctor. Given that this condition is being managed and treated with some success in the US, many of these patients have come to the realization that the medical system does not think their lives are important or worth saving. Dr. Shamji was the only doctor I know of in this country that took it upon himself to learn about this disorder and how to help patients with complications from it, such as cervical instability. Given the horrific events of the past week, this entire population of patients in Canada are now without help and without hope. Mr. Hoskins, it is now on you to step up, take responsibility and take steps towards rectifying this issue. The public is watching.

We should not ignore all those people who suffer from medical problems.

I had to have neurosurgical complications of EDS treated in the US at great expense to my family. I feel abandoned by my healthcare system and my province. I feel frightened of what will happen to me and my affected child should we need neurosurgical care in the future.

My older sister had neck surgery this year, so I expect I will need it within 5 years. Please help us.

I urge you to please provide the necessary surgery for patients of EDS. They have waited long enough and now god knows how much longer they will have to wait after the unfortunate circumstance surrounding Dr. Shamji.

I have vascular EDS

Please come up with resolutions soonest possible to help these patients.

An important item

I concur with the sentiments expressed by Adena Gutstein.

I have EDS and I was waiting for a fusion and decompression from Dr. Shamji. I am a struggling PhD student and former medical school applicant, social advocate, and athlete. I spend most of my days crippled by seizures, migraine, syncope, vision loss, and fatigue. I want my life back! Shamji was my shot! You have a responsibility here, we need you, I need you.

While the system is not responsible for the current situation arising from the murder OHIP has a responsibility to address the needs of impacted patients as swiftly as possible and with compassion that is what as an Ontarian I would expect from our government.