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!
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!
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.
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.
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.
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