What the HHT?
A blog for the HHT community
Posts by Riley Blevins
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.”
Read MoreHHT rocked our world
Since birth my husband Josh has known he has HHT. His mother and her five siblings all inherited it from their father (How wild are those odds!). When his mom saw a telangiectasia on his foot, she knew he had inherited it too. At this point HHT, the family believed HHT was just a nose bleeding disease. They had never had any preventative scans done.
Fast forward almost 40 years. Halloween weekend of 2021 our 12 year old daughter was diagnosed with Pulmonary Arterial Hypertension after finding out she was in severe heart failure. After a week of testing and a genetic confirmation, we found out her Pulmonary Hypertension was caused by her HHT (ACVRL1). HHT caused a malformation of the arteries that deliver blood from her heart to her lungs. Only 1% of people with ACVRL1 have PAH. Again, what crazy odds!
Read More2024 National HHT Patient & Physician Conference
Join us for the first National Patient & Physician Conference on the east coast in some time – patients and healthcare professionals alike won’t want to miss this opportunity!
We will we bring together the experts from 3 of our top centers – University of Pennsylvania/Children’s Hospital of Philadelphia, Johns Hopkins University and New York Presbyterian/Columbia University. Registration opens soon! Learn more >>
Read MoreHelp save lives this Giving Tuesday
Establishing new Centers of Excellence is essential to providing life-saving, expert HHT care to patients across the globe – including our littlest of patients like Jahier, Liam and Willie.
One of the many ways your donations will be put to use this Giving Tuesday is by helping to expand our pediatric reach – to certify more HHT Centers of Excellence with pediatric specialists – and grow the number of physicians educated about HHT. This is especially important for pediatric patients, where HHT can be more difficult to diagnose as symptoms do not often manifest until later in life. Early screening and expert treatment is vital to preventing complications and avoiding unneeded suffering and loss.
Read MoreWebinar – Pazopanib: A Groundbreaking Trial for HHT (Recording)
Get your questions answered about our newest clinical trial! Join Cassi Friday, PhD and Jim Gossage, MD as they explain who is eligible, what Pazopanib is and how you can get involved!
Read More