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Pulmonary Arterial Hypertension (PAH)

In March 2014, at the age of 24, my daughter was diagnosed with severe Pulmonary Arterial Hypertension (PAH) which is progressive and fatal. Left undiagnosed and untreated, the average life expectancy is 3 years. PAH is a complex disease; not all patients use or respond to the same medications. The Ontario government is looking to take away the ability of PAH doctors to prescribe individualized treatment. They want a one medication-fits-all approach which will negatively impact patient health.

Joan Paulin
Mississauga, Ontario

Ehlers-Danlos, Chiari Malformation & cervical instability

I am a 30 year-old female with Ehlers-Danlos, Chiari Malformation, and cervical instability. Despite many years of illness, it was not until recently that I was properly diagnosed. Unfortunately, this diagnosis did not come from a Canadian doctor. While my condition is incurable there are treatments to help minimize symptoms, however, these and treatments are not covered by provincial health insurance. They therefore remain accessible to me.

Lindsay Wilson
Guelph, Ontario

Sciatica & Tarlov Cyst Disease

I have suffered from Sciatica for 34 years. Now I am unable to stand or sit due to increasing pain in my sacrum. I was diagnosed with Tarlov Cyst Disease a few years ago by an interventional neuroradiologist. Doctors and radiologists here deny Tarlov cysts cause problems, calling them asymptomatic. I have been on multiple pain medications for years . There is noone here who can perform pain relieving surgery and surgeons outside of Canada charge fees that are unattainable. I am suffering.

Fiona A Flint
Rockwood, Ontario

Pulmonary Arterial Hypertension (PAH)

In December 2013, at the age of 39, I was diagnosed with a rare, incurable disease called Pulmonary Arterial Hypertension (PAH). At present, there are 9 approved drugs to treat PAH, but every patient requires something different as not everyone responds the same to these drugs. Currently, the government is looking at taking away the power of specialists prescribing the best drug to treat PAH and instead, they want them prescribing the cheapest drug, whether it works or not.

Nicole Dempsey
Cambridge, Ontario

Membranous Nephropathy

I have a rare autoimmune kidney disease – membranous nephropathy which for some patients progresses to kidney failure over time. Fortunately I have been able to take a drug that helps keep me in remission and protects my kidneys from failure. The cost of this drug, not covered, is $4500 per treatment. The cost of dialysis is upwards of $40,000 per year which is covered. The frustrating thing is that this drug is routinely used for cancer patients and covered 100% by OHIP. It’s not right.

Wade

Myelodisplastic Syndrome

I have incurable myelodisplastic syndrome, and my bone marrow makes malignant blood cells. For six years, thanks to the Province of Ontario, I have been taking a special drug to maintain my blood, I am prescribed this drug because I am over sixty five, but for anyone under, it is devastating to know that there is a drug which might help, but you cannot afford it. We need a programme that makes sure everyone who needs them, can have access to the drugs for rare diseases like mine.

Rosemary Pauer
Brampton, Ontario

CDKL5 Disorder

I am the mother of an 11 year old girl diagnosed with CDKL5 disorder, I am also the president and founder of CDKL5 Canada. CDKL5 is an x-linked disorder, the most significant indicator is early-onset difficult to control seizures. My daughter had her first seizure at four months of age and at eleven she has never been seizure free.

Sangeeta Staley

Tarlov Cyst Disease

I am living with this incurable, extremely painful disease which rates the highest of pain on the McGill Pain Index. This disease is ‘constant’ pain, despite pain medications which do not ‘relieve’ the pain. The disease can spread full body. Treatments available out of country are not available here. We desperately need availability to same. Please help to put the CRPS fire out!

Greta Plantinga

Complex Regional Pain Syndrome

I am living with this incurable, extremely painful disease which rates the highest of pain on the McGill Pain Index. This disease is ‘constant’ pain, despite pain medications which do not ‘relieve’ the pain. The disease can spread full body. Treatments available out of country are not available here. We desperately need availability to same. Please help to put the CRPS fire out!

Linda LaMothe

FOP (Fibrodysplasia Ossificans Progressiva)

My 6 year old son has an ultra rare version of a rare disease – FOP or Fibrodysplasia Ossificans Progressiva. He is progressively losing mobility as his soft tissues are turning to bone. There is a drug in trial now that may offer hope in the future but not if we can’t access it or afford it. We have also incurred out of pocket expenses to travel to the FOP expert Doctor – in the US. At home there is no one who understands this condition.

Lara Theoret



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