What the HHT?
A blog for the HHT community
Posts by Ashley Watkins
I Have My Life Back (Thanks to HHT CoEs & New Advancements)
I turned 57 this year – which is a particularly meaningful milestone for me. It’s the same age my father passed away from HHT complications in 1991. Even still, I wasn’t diagnosed until several years later. I had nosebleeds, but they didn’t seem excessive. I could tolerate them just fine – they were more of…
Read MoreEarly Scans Saved Our Son
I was shaken awake — my wife’s hand on my back. It was still pitch black in our Cincinnati hotel room. Blurry-eyed, I glanced at the nightstand. 4:30 a.m., the glowing screen read. “Everything ok?” I asked, still half asleep. “He has a high-risk brain AVM,” she said. “They posted the results in MyChart.” The words…
Read MoreStrides for Strength
Join members of the HHT community around the world for our 3rd annual global virtual walk for a cure! We are excited to officially kick off registration for our 3rd annual Strides for Strength – Virtual Walk for a Cure on June 4, 2022. This year, there are even more ways to get involved – you can walk,…
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PH & HHT – Signs, Symptoms
& Disease Management (Recorded)
PH and HHT: Signs, Symptoms & Disease Management Join PHA and Cure HHT for the PHA Live webinar “PH and HHT: Signs, Symptoms and Disease Management” at 7:30 p.m. EDT, Wednesday, June 22. Murali M. Chakinala, M.D. will discuss the importance of recognizing the signs and symptoms of Pulmonary Hypertension (PH) and Hereditary Hemorrhagic Telangiectasia…
Read MoreWMAR Baltimore: Musician with rare disease overcomes health scare
March 9, 2022 | WMAR Baltimore | By Abby Isaacs. Musician with rare disease overcomes health scare – “A rare disease turned a Maryland man’s life upside down and it all started with one symptom. Now that he has a treatment plan that works, he’s sharing his story, hoping it helps others to get diagnosed early.”…
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