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Complex Regional Pain Syndrome

I am unfortunately one of the few in Canada with this very misunderstood and incurable disease that holds the top most position on the McGill Pain Index. The brain of a CRPS patient mis-reads signals and sends them out through our parasympathetic and sympathetic nervous systems as excruciating pain. Treatment is costly and not readily available in Canada. Only patients with financial means can access out of country treatment which can run $10-$25,000/year

Deb Burton

Chiari Malformation

I am a wife and a mother of 2 children. I also work full time as a home care nurse. I have suffered severe headaches for years due to a rare condition called Chiari Malformation. My head felt like it was going to explode when I coughed or even laughed. This condition is where the lower portion of your brain is squeezing out the base of the skull into the spinal column. Pain medications are very important for just normal every function for people with this disease. Doctor education is needed.

Sylvia Rehling

Erdheim-Chester Disease

My husband, Timothy Green after 8 years of illness, has just had a confirmation that he has a rare disease , ECD – Erdheim-Chester Disease is an extremely rare disorder that can affect many different organs of the body. It is characterized by excessive production and accumulation of specific cells whose normal function is to fight infections. We still in the process of waiting for a referral to a doctor that knows about ECD and hopefully getting treatments that may cost thousands of dollars.

Kim Pape-Green

Aplastic Anemia & PNH

I am a 39 year old mother with both Aplastic Anemia and PNH (Paroxysmal nocturnal hemoglobinuria) and was the first patient in Ottawa to receive Soliris (Eculizumab). It had a Pulmonary Embolism, Budd-Chiari Syndrome and a clot in my head. It took 30 years and 3 bone marrow aspirations to be diagnosed.I am extremely lucky to still have access to Soliris.

Meredyth Geraghty

Leukocytoclastic Vasculitis

Hello! Thank you!!
In Oct 2013, I was finally provided with a diagnosis of leukocytoclastic vasculitis by an amazing Nurse Practitioner at Leamington Memorial Hospital. Over 40 years of “specialists” and ER visits I finally have a diagnosis. The sad part is no-one seems to know how to treat it. My mother and several siblings have the same symptoms with no diagnosis yet!

Linda Grenier

Syringomyelia

I live with syringomyelia, a disorder that causes cysts in the spinal cord, leading to severe chronic pain. My pain is managed, but never taken away, with a combination of medications and lidocaine infusions. I am required to keep a pain diary to track the infusion’s effectiveness because the govt will only fund it for patients it feels are benefiting “enough.” I need it to function normally.

Jodee Redmond



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