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Sarcoidosis

After 10+ years of symptoms and being told “it’s a virus” “it’s stress or anxiety related” my body finally decided enough was enough. I was diagnosed with Sarcoidosis in my eyes, lungs and lymphnodes. Though my skin, joints and stomach are affected to. Unable to work and unable to feel like a mom and wife to my family, it’s very depressing and frustrating. But I will continue to fight!

Tagan,
Port Dover, Ontario

Complex Regional Pain Syndrome

I have suffered from this terrible disease for over 10 years. During this time I have tried many therapies and the ketamine infusions. I have received the best hope of having a normal life. I think it is atrocious that others suffering from this disease (a disease that scores higher than Cancer and Childbirth on the McGill pain chart) do not have access to this treatment in our hospitals across Canada!

Cheryl Ritchie
Angus, Ontario

Spontaneous Cerebral Spinal Fluid Leak

May, 2010 I developed a Spontaneous Cerebral Spinal Fluid Leak. Somewhere in my body I had a tear in the casing that surrounds your brain and spine, thus allowing the fluid that keeps your brain floating. My brain was sagging down my neck.The only way to control the pain is to lay flat almost 24 hours a day. There are no doctors in Canada that can find the leak, much less fix it. There is 1 doctor in the US that is having some success. But, it costs a fortune, with no guarantee.

Brampton, Ontario

Hypoparathyroidism

Like 75% of sufferers, I acquired this condition following thyroid surgery. Some 40% of patients will eventually experience kidney or congestive heart failure, or Parkinson’s. There is no cure, and little is known about the disease. OTC medications are my only option. Of course they aren’t covered, and don’t fully manage the problem. A new drug to treat it has FDA approval, but costs over $100K per year. I am unable to work and feel my future has been stolen from me.

Guelph, Ontario

SEDc (Spondylaepiphyseal Dysplasia Congenita)

My daughter Joy is 4 and has Spondylaepiphyseal Dysplasia Congenita. Also called SEDc – it’s a rare form of dwarfism found in only 1 in 100,000 people. It’s not inherited in our case and affects her type II collagen found in eyes, ears and vertebrae. It took 3 years to get a diagnosis since she didn’t present with typical symptoms. There is no ‘cure’ or treatment, as she gets older she will hurt more, develop arthritis or osteo and likely have hip replacements or complete reshaping.

Jolene MacDonald
Wellesley, Ontario

Antiphospholipid Antibody Syndrome

Antiphospholipid antibody syndrome…antiphos..what? Thats right! I have that. At 23 I was told I would be lucky to see 30, next week I will be 31. My body feels like I’m 80, my medication runs in the $3000 a month mark without coverage and somedays I cant leave my house due to many different ailments and pains but I’m alive. 7 clots, pulmonary embolisms, countless surgeries and I’m still here. Not many know of this. I struggle with doctors because it is so rare. Please help rare diseases!

Loren Gibbs
Capreol, Ontario

Ehlers Danlos Syndrome (EDS) Vascular Type IV

I was finally diagnosed with EDS in 2010, after the passing of my twin sister (Kayla). Their isn’t a day I don’t wake up in pain. But all my doctor is doing is treating by symptom. I need to be seen by someone that knows about EDS. Ive lost everything due to EDS, I can’t work anymore. I can’t exercise as much anymore. Please realize this illness has no cure and all I want to do is be seen by someone with some knowledge on EDS before its too late.

Kari Bourque
Little Current, Ontario

atypical Hemolytic Uremic Syndrome (aHUS)

My husband became sick in December 2002. He lost his kidneys and is relying on dialysis 5 nights a week In 2011 he was finally properly diagnosed with atypical Hemolytic Uremic Syndrome (aHUS) a rare, life-threatening, chronic disease that can damage your body’s vital organs. He has been unable to work and not eligible for a kidney transplant unless he receives the Health Canada approved drug which is denied to him by the Ontario Gov’t. It’s time patients get access to the drugs they need.

Margriet Eygenraam
Brampton, Ontario

Wegener’s Granulomatosis

At the age of 23 (female) – I have Granulomatosis with polyangitis (aka Wegener’s Granulomatosis). I was misdiagnosed by a number of doctor’s for over 2 months – during which time, the disease attacked my kidney’s and shut them down. No one can tell me how this disease developed, no one can tell me if I can pass it along to my own children (if I choose to have any), and there is no known cure other than chemo treatments to push it back into remission. No one knows anything of my future.

Jess
Sudbury, Ontario



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