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Sarcoidosis

My life was ripped out from under my feet at age 40 prior to that I walked around coughing for 3 years. I also couldn’t take two steps without falling over. I felt no doctors would listen but then finally one did and I had a PET scan and it was a diagnosis of lymphoma. Only after 3 biopsies to find out its Sarcoidosis a rare inflammatory disease mine pulmonary also a diagnosis of pulmonary hypertension I’m on 02 24/7 also I’m in the process of getting on a list for a double lung transplant.

Lee-Ann Bruce
Ottawa, Ontario

EDS

When my son was diagnosed with Autism 20 years ago, it was considered “rare” and I was offered no help, no hope. Now I’ve been diagnosed with Ehlers Danlos Syndrome, and history is repeating itself. The diagnosis took over 5 years and destroyed my confidence as my mental health was repeatedly questioned. I am still struggling with undiagnosed comorbid conditions, and am spending thousands of dollars on the Registered Psychologist I need to support my dealings with dismissive doctors.

Patricia Roue
Ottawa, Ontario

Complex Regional Pain Syndrome Type 2

I suffer from Complex Regional Pain Syndrome Type 2, and was diagnosed in 2010. I find it very frustrating that there are very limited treatments available for patients and the daily pain threshold we experience, is the highest on the McGill Pain Scale. When you speak with other individuals around the world, the treatments available to them are many, here in Canada we are so limited. Research and treatments need to be addressed to help all living with rare diseases!!

Michelle
Brampton, Ontario

Syringomyelia

Syringomyelia has forever changed my life in the negative. It took 10 years of not feeling well and everyone not believing me that I do not feel well, as the pain is internal. Test after test, after test, week after week, after week of not feeling well. Test after test of the results being negative until finally 10 years later an orthopedic surgeon ordered an MRI of my spine, there on page two all by itself were the words “a small syrinx.” No other time could the word small mean large.

Fort Erie, Ontario

aHUS

Our daughter was diagnosed in November 2015 at 8 months old with atypical Hemolytic Uremic Syndrome (aHUS), a rare, life-threatening, chronic genetic disease that can damage the body’s vital organs. As parents we were heartbroken at the diagnosis & later devastated to learn that OHIP does not cover the drug she needs. At an approximate cost of $500 000 per year, there was no feasible way we could provide it for her. After much stress & paperwork, funding has been secured for only 6 months.

Dionne & Dan Papineau
Hanover, Ontario

Lyme Disease

My story is about a rarely diagnosed disease in Ontario – Lyme Disease. There are thousands of Lyme patents in Ontario who are forced to go to the U.S. for diagnosis and treatment. Because the accurate diagnosis of Lyme by U.S. testing is not recognized here, many lose their jobs, their health, and lives, in many cases. If we could all get treatment here, we not lose everything, and become a burden to our families, our province, and lose our whole quality of life.

Leamington, Ontario

Alpha 1

My husband lives with Alpha 1 Antitrypsin Deficiency, a rare, hereditary lung disease for which there is no cure. The only drug available slows the progression of the disease, but is not covered by OHIP.   He currently receives it weekly through my work benefits, but we have twice had to fight to continue coverage and it will not likely be available to us after my approaching retirement.  At $2000  per week, continuing the drug, which has kept him healthier longer, will not be an option.

Lesley Kimble
Kingston, Ontario

Schnitzlers Syndrome

I am one of the few world wide diagnosed with the rare disease Schnitzlers Syndrome. The body of a SS patient basically attacks itself & it causes extreme joint & muscle pain severely affecting quality of life.  Little is known about SS.  Anakinra, a daily injection that is not covered by OHIP or insurance as SS is not a Health Canada designation for this medication is the difference between existing & living.  There is so much more to my story I would love to share.

Karolena Dempsey
Barrie, Ontario

Idiopathic Pulmonary Hypertension

At the age of 25 I was diagnosed with stage 3/4 Idiopathic Pulmonary Hypertension. PH is a rare, incurable, progressive and often fatal illness. I learned that although 14-15 medications are available in the US- only 9 are available here. Some of the treatments that are available in the US are also life changing. Sadly I have run out of room, but please visit http://phightorflight.blogspot.ca/ to learn more about me and my advocacy.

Serena
Kitchener, Ontario

Ehlers Danlos Syndrome

It took almost 30 years to be diagnosed with Ehlers Danlos Syndrome, was told there are no doctors to help me here. I had craniocervical fusion (head is fused to neck) & tethered cord surgeries (spinal cord was attached to sacrum) in Maryland, price $140.000,00, OHIP did not pay anything, and we sold our house. These surgeries gave me back my life by having improved quality of life and increased independence even if I have pain 24/7, spinal cord injuries and muscle atrophy from late diagnoses.

Thank you for bringing EDS to the Health Minister’s attention.

Nicoleta Woinarosky
Ottawa, Ontario



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