What the HHT?
A blog for the HHT community
News
New HHT Center Gives Hope to Father and Son with Rare Genetic Disease
May 19, 2020 | Michigan Health | by Rene Wisely: “Nose bleeds are a less frequent tradition in the Gutowski family now as a team of doctors work together to treat their abnormal blood vessels caused by hereditary hemorrhagic telangiectasia…”
Read MoreCanada Girl’s Rare Disease Inspires Her to Co-Author Book
May 31, 2020 | The Peterbourough Examiner | By Omar Mosleh: “Most kids in the hospital spend their time thinking about going home, but Eleni Zoe Pournaras spent her time in the Hospital for Sick Children putting the finishing touches on a book she co-authored and illustrated…”
Read MoreStanford News Center: Patient Spotlight – Jennifer Cook and Nina Murphy-Cook
March 9, 2020 | Stanford Medicine |by Tracie White – “Jennifer Cook has dealt with migraine headaches and nosebleeds since she was in junior high school, but it wasn’t until much later in life, after two small strokes in her 40s, that she discovered these seemingly disconnected ailments — including strange, little red dots on…
Read MoreHHT in the News: “World Rare Diseases Day: Three people on how their unusual conditions affect their lives” (Article 3)
February 27, 20202 | Irish Times | by Sylvia Thompson – “Michael MacGinty from Letterkenny, Co Donegal, says that watching family members having serious unexplained nose bleeds has been part of his life for as long as he can remember. “My earliest memories are of my grandmother constantly clutching a handkerchief that was blood-stained. My…
Read MoreHHT in the News: “I have the same rare disease that killed my brother”
February 24 2020 | Independent.ie “As Rare Disease Day falls this Saturday, Katie Woods tells her story of living with HHT – a genetic blood vessel disorder…”
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