Canadian Marfan Association

Canadian Marfan Association

November 11, 2011 11:19 ET

Celebrating 25 Years of Service: The Canadian Marfan Association is Growing Up

MISSISSAUGA, ONTARIO--(Marketwire - Nov. 11, 2011) -

ATTN: HEALTH REPORTER

A 6'8" teenager is constantly aware of the laughter that follows him. He knows he looks awkward. Instead of athleticism or classic good looks he relies on his intellect and sense of humour to make friends. He can't play sports. His skeleton is too fragile. His bones are stretched and he is loose-jointed. The lenses in his eyes are at risk of dislocation. He has Marfan Syndrome.

Five days post-partum, a young mother is having emergency open heart surgery. A genetic mutation caused her aorta, the largest vessel in the human body to tear in response to added blood volume and the hormonal changes of pregnancy. She survives. Her father did not. He died at age 45. Soon her sister and daughter are diagnosed carrying the faulty gene. They have an ACTA2 mutation.

At age 4, a witty kindergarten student lies in the echo lab. The technician measures the diameter of his aorta and notices that his eyes are very wide set as he stares up at the television. Every year he'll have this examination. Every year his parents will wonder, "is this the one"? The yearly echocardiogram decides whether or not preventative vascular surgery will be needed. He has Loey's-Dietz Syndrome.

Although each condition has a unique name, they, along with a host of others, share the common, deadly risk of aortic disease resulting from connective tissue deficiencies. Originally, the Canadian Marfan Association (CMA), founded in 1986 supported sufferers of Marfan Syndrome alone. Now 25 years later, medical advances have meant the identification of new disorders that are closely related to Marfan Syndrome.

Our family is growing and so is the scope of The Canadian Marfan Association. National Marfan Awareness Week is November 13-19, 2011 and CMA members, friends and families across the country are helping spread the word and educating others in their local communities about Marfan syndrome and related disorders by holding activities and events. Please support us as we move to a new inclusive model of care. Visit our website at www.marfan.ca to read more about Marfan Syndrome and to make your donation today.

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