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June is Hereditary Hemorrhagic Telangiectasia Awareness Month

Toronto, June 21, 2013

By Emily Latourell

CN Tower
CN Tower

The CN Tower will be lit in blue and red on June 27 to draw awareness to Hereditary Hemorrhagic Telangiectasia, a dominant genetic disorder that causes abnormal blood vessels to develop in various parts of the body.

When blood vessels are larger than normal they are referred to as arteriovenous malformations or AVMs and can lead to strokes or life-threatening hemorrhages. Smaller malformations (telangiectasis) can lead to chronic bleeding from the nose, stomach and bowels. Many people who have HHT are unaware, as 75 per cent of affected individuals are undiagnosed.

Canada’s first and largest HHT centre is based at St. Michael’s Hospital. The Toronto HHT Centre offers patients like Patricia Duguay a team-based approach to HHT care. Duguay has been coming to the HHT Centre from Kitchener, Ont., for more than five years and says the clinic, “made it easy to keep on top of my condition.”

According to Duguay, the clinic offers patients like her all aspects of HHT testing and treatment, in a way that is respectful of the patient’s time given how far the HHT centre is for many patients.

Medical Director Dr. Marie Faughnan leads the team, which follows about 1,500 patients.

HHT Canada is also starting a foundation to help fundraise and increase awareness of HHT, also known as Osler-Weber-Rendu Syndrome. The first fundraiser will be held on June 26 from 6:30 - 8 p.m. at DeSoto’s on 1079 St. Clair Ave. W.

About St. Michael’s Hospital

St Michael’s Hospital provides compassionate care to all who enter its doors. The hospital also provides outstanding medical education to future health care professionals in more than 23 academic disciplines. Critical care and trauma, heart disease, neurosurgery, diabetes, cancer care, care of the homeless and global health are among the Hospital’s recognized areas of expertise. Through the Keenan Research Centre and the Li Ka Shing International Healthcare Education Centre, which make up the Li Ka Shing Knowledge Institute, research and education at St. Michael’s Hospital are recognized and make an impact around the world. Founded in 1892, the hospital is fully affiliated with the University of Toronto.