As many of you know, I have been struggling with a number of the health issues from Ehlers Danlos Syndromes, including chronic pain, fatigue and neurological issues. In 2016, I had an accident that caused compression in my spine. Now 503 days after that accident; after being seen at two major hospitals; after having 7 referrals to neurosurgeons rejected; after loosing the one neurosurgeon who did have the expertise in EDS and complex spine cases for unimaginable reasons; and were I was told by an Orthopedic Surgeon that I have scoliosis that is in the surgical range but due to my hypermobile Ehler-Danlos Syndrome (hEDS), he would not operate; and after he dismissed my bladder and bowel issues as Gastrointestinal Issues, which the neurologist confirmed as being due to neurological factors with compression of the spinal cord or nerves, I am being left to manage my symptoms, requiring home care for assistance with showering, dressing and wound care. Prior to this on set, I was capable of managing these tasks of daily living.
The neurologist did tell me that best practice guidelines is to have corrective spine surgery in under 2 years to protect against irreversible nerve and tissue damage, but that there are no neurosurgeons in Ontario who treat EDS patients.
For this reason, I am faced with having to go to the United States to be treated by a knowledgeable neurosurgeon who can give me my life back! I am turning 48 in April. I have a long life ahead of me, where my quality of life could be much better if there was knowledgeable specialists in Ontario.
Please help: This campaign is to cover the out of pocket costs of travel, accommodations and other expenses for my spinal surgery in the United States. If OHIP approves my Out of Country application, I could be away from home for up to 12 weeks. If OHIP doesn't approve this surgery then I will have to pay close to $150,000 to cover all the costs.
I firmly believe in the Ontario Health Care system and have been working on improving it through my volunteer work with my local Community Health Centre, Health Links, Health Quality Ontario's Clinical Reference Group, Accessibility Advisory Committees, Community-based Arthritis Pool Program and with running a Peer Support Group for persons living with EDS but this gap: shortage of Neurologists and Neurosurgeons to manage and treat patients living with Ehlers-Danlos Syndromes is an issue for many more citizens of Ontario than just me. I will be sharing the challenges of others who also can't access specialists to manage their neurological issues.
Why the Electrician reference? They are the equivilant for Neurologist/Neurosurgeons in the medical specialities.
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