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What the HHT?

A blog for the HHT community

They told John he only had a month left to live…he knew he had to keep fighting

John Bannon was told he had about a month left to live. For over a decade, John searched for relief to try to manage his increasingly severe nosebleeds. Bleeds so bad that he became known as “the nosebleed guy” to the local ambulance team – and so severe he was reliant on 2 to 4 units of blood every other week. In a matter of months, John went from 220 pounds down to 165. His organs were beginning to fail.

John had tried everything, it felt like. He had multiple cauterizations at Yale and UPenn, made a trip to San Diego to try Avastin, had his nose embolized at Columbia; none of it was effective in getting the bleeds under control. “It felt like there was no hope, but I wasn’t going to give up,” John said. “I knew I had to keep fighting. Between my wife and I, we have 11 children and 17 grandchildren. Five of my kids have HHT, and some of my grandkids do as well. I was determined to find something before I left this planet that would help them not struggle like I had.”

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Suffer from brain AVMs? You can help further HHT research today

Cure HHT, along with HHT Centers of Excellence across North America, are now actively recruiting HHT patients worldwide to participate in the NIH funded study, entitled “Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia (HHT)”. The goal of this research is to determine what genetic and clinical factors signal high risk for hemorrhage from brain AVMs.…

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PAZ Clinical Trial Now Recruiting

HHT Centers of Excellences across the U.S. are now enrolling patients to participate in the new randomized clinical trial to assess the effectiveness of Pazopanib in reducing the severity of nose bleeds in adults with HHT.

To learn more about the trial and to understand if participation may be right for you, please visit the clinical trials section of our website.

By participating in clinical research, you can play a role in helping the development of new treatments and therapeutics – which have the potential to lead to a higher quality of life for generations of HHT patients.

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