Many have heard of the unexpected death of beloved actor, host and comedian Bob Saget this month – and, if you’re like me and thousands of others across North America, we’re collectively saddened.

As a charismatic television host, Bob has brought many laughs to generations of people across North America. But there was another side to Bob that many don’t know about – it has to do with a disease called scleroderma.

Scleroderma is a rare autoimmune disease. It involves hardening of the skin and connective tissue, and often significantly affects internal organs. There is no remedy.

Bob’s sister Gay, a teacher, became very ill and eventually died of scleroderma at age 47. His illness and death came as a terrible shock to the family and Bob would say his parents suffered from PTSD as a result of the experience of caring for Gay through his illness. Bob has been a dedicated advocate for the scleroderma cause for over 25 years. He volunteered actively and eventually became a board member of the Scleroderma Research Foundation, raising millions of dollars and hosting his comedy show Hot Cuisine, Cool Comedy for the cause.

Saget recalled to People Magazine, “I said yes and organized the event, which featured Ellen DeGeneres, Rosie O’Donnell and others. Little did I know that a few years later, my sister would be diagnosed with the disease.”

Currently, over 400 people in Atlantic Canada are living with scleroderma. The diagnosis can be very difficult and can take years to be confirmed. Tests are very specific and treatments can be both difficult to access and inadequate for the myriad of symptoms.

Scleroderma Atlantic is a non-profit organization run by volunteers, most of whom have scleroderma or have treated or are caring for someone with scleroderma. If you are reading this and know someone with scleroderma, please share our organization information with them. They can visit our website sclerodermaatlantic.ca where they will find access to support and community.

Bob Saget will be missed. He made us all laugh and showed his dedication to a cause we share at Scleroderma Atlantic.

Jason Doucette, President
Atlantic Scleroderma

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