Rare Diseases

Medical professionals often call them "orphan diseases." They're very rare, poorly understood, difficult to diagnose. And the people who suffer from them frequently face an up-hill battle to get treatment. Meet someone who has been diagnosed with Erdheim Chester Disease and find out what her battle to get treatment says about how we deal with rare diseases.


Rare Diseases

Two years ago, Sandy Trunzer was diagnosed with something called Erdheim Chester Disease. It's very rare. Just a few people in Canada have been diagnosed with it. It can be devastating. Medical professionals sometimes call diseases like this "orphan diseases." They are often very difficult to diagnose. And people who suffer from them can find themselves facing a long and challenging journey to get treatment.

In Sandy Trunzer's case, it has taken her months to get her insurance company to cover an expensive drug prescribed to treat her symptoms. She won that battle -- at least temporarily -- on Wednesday. She was in Toronto. Mike Tarle is a businessman in Cornwall Ontario. And he too was diagnosed with Erdheim Chester Disease. Durhan Wong Rieger is the President of the Canadian Organization for Rare Disorders in Toronto. And Doctor Herbert Ho Ping Kong is the Chang Chair in the teaching of internal medicine at the University of Toronto. He's also the co-founder of the Toronto General and Western Hospital's Centre for Excellence in Education and Practice.

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