What the HHT?
A blog for the HHT community
Posts by Riley Blevins
Help 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 MoreAccess to expert care at CHOP saved Jahier’s life
January 21, 2023 started off like a normal day for 13-year-old Jahier and his mom, Amber. The two had just gone out to eat and did a little shopping afterwards. When they arrived home, Jahier helped carry a few bags inside when suddenly he started to cry. “It wasn’t a normal cry,” Amber recalled. “He started saying he couldn’t feel his legs and said his head was hurting.”
Amber didn’t wait. She rushed him to the local emergency room, which was just a 5-minute drive down the road. By the time they arrived, Jahier couldn’t walk. The team of doctors called for a stroke alert and conducted a brain CT. The first scan looked normal, but Jahier’s condition continued to worsen. A second scan, this time with contrast, revealed a ruptured brain AVM — and the bleed appeared to be spreading.
Read MoreCreating hope on Giving Tuesday for our littlest of patients
As a little boy, Liam seemed to feel sick very frequently – far more than his two older brothers. He’d have a harder time recovering from illness, being sluggish, tired and missing many days from school. Mary, Liam’s mother’s concern started to grow as the pediatrician visits got more and more frequent. For years, she was told the same things – it’s probably allergies, or just a viral infection. But those answers weren’t good enough for Mary. She took him to gastroenterologists, immunologists, requested blood work and more, searching for answers. It would take nearly a decade to finally get an answer, when Liam was 14.
Read More15th HHT International Scientific Conference
The 15th HHT International Scientific Conference will take place in Mandelieu-la-Napoule, France from October 15-19, 2024. Connect with researchers unraveling the mysteries of HHT mechanisms of disease and discovering potential therapies for patients around the world. Registration is now open! Learn more >>
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