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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.

Sudbury, Ontario

Erdheim Chester Disease (ECD)

I am suffering from a rare disease called ECD ( Erdheim Chester Disease). This disease has forced the removal of both of my kidneys and I had a kidney transplant in February 2014. A drug called Zelboraf has been proven to help people with this disease but if has not been approved in Canada for treatment of ECD. We need help from our government to get this drug approved. Please help.

Dave Wipp
Newcastle, Ontario

Miller-Dieker Syndrome

My son Jordon was diagnosed at 6 months old with miller-dieker syndrome. For weeks I had him in and out of our local emergency department. Everyone thought he had colic gas and was fussy about how quickly or slowly he was getting his formula. Little did I expect a palliative diagnoses that day in cheo. Jordon is still fighting to be here everyday. Every moment is a miracle together. He takes medications daily to control seizures and help with muscle aches.

Hillary Shillington
Brockville, Ontario

Ehlers-Danlos – Hypermobility

I have Ehlers-Danlos, hypermobility type. I suffer from osteoarthritis, hypermobile joints, chronic pain, multiple G. I. problems as well as H.C.M., and P.O.T.S. All of these are related to EDS. It took twelve years of suffering, and multiple trips to Toronto’s Mt. Sinai hospital to attain a diagnosis in 2014. All treatments only treat the symptoms, no cure.

Most physician’s are uninformed.

I can now no longer work due to severe pain, and complications.

Kingston, Ontario

Congenital Central Hypoventilation Syndrome (CCHS)

My daughter Angela was born with congenital central hypoventilation syndrome or CCHS. She is roughly 1 in 1000 worldwide. CCHS is the brains inability to tell the body to breathe when co2 builds up. For 19 years the numerous vents have not been covered because of one disqualification or another.

Heather Massel
Crosshill, Ontario

Necrotizing Fasciitis

My mother was stricken with this horribly aggressive rare disease. She was very healthy and active still at age 55. After noticing a lump in her neck and feeling nauseous she went to see the doctor. Severe vomiting and coughing continued while in the doctors office. No medical scans were done to diagnose properly. Doctor told her take this pill,(antibiotic) and you should notice a difference by morning and dismissed her. RIP mum.

Jon Brentnall
Windsor, Ontario


I have Sarcodois in my: lymph nodes, lungs, skin, eyes, bones. My spleen and pancreas are swollen, which results in: headaches, blurriness and extreme fatigue. I have had numerous doctor appointments and sent to so many specialists. Some say “don’t worry it just goes away”. That is not truth and they need to really look at this, more people are suffering from it, something is wrong. We worked hard to own on a lake for retirement but we sold now and moved into small home as I couldn’t handle the work. Support us!

Bowmanville, Ontario

Transverse Myelitis

On January 24th, 2009 I woke up not being able to move my fingers on my right hand and a sharp, intense pain between my shoulder blades. Within 24hours I was completely paralyzed from the neck down. I was put on life support given steroids, IVIG treatments, plasma exchanges, MRI’s and spinal taps. I spent a total of 5 months in the hospital relearning how to breathe, eat, sit, swim, stand and eventually walk with some assistance.

Suzie Welk
Eganville, Ontario

Tarlov Cyst

Since August 2014 I’m in chronic pelvic, lower back pain while sitting or lying down. The MRI I had in Feb 2015 indicated I have a large Tarlov cyst in my lower spine. Even though more than 50 years ago it was confirmed these cysts are symptomatic, the physicians in Ontario are adamant that they are asymptomatic. It seems easier for them to take that approach rather than admit these cysts do cause symptoms and admit they do not have the expertise to treat them.

Mississauga, Ontario


A disease many times caused from a minor trauma, affects the nervous system causing ongoing pain. For 10+ years I’ve suffered with this. Once an active R.N. I now spend my days unable to do most previous things and the daily living now causes me pain. I can no longer drive outside my vicinity and therefore feel very isolated. This is sometimes known as the invisible illness or the suicide illness. Education, research and assistance to those suffering is desperately needed.

Donna Coulter
Leamington, Ontario

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