What the HHT?
A blog for the HHT community
Posts by Riley Blevins
An HHT patient conference can change your life
A Letter from Cure HHT Board Member, Jim Lapides
I am writing to share an invaluable opportunity for all HHT patients – Cure HHT is hosting its national patient conference. I say “invaluable opportunity” because going to my first patient conference in 2012 saved my life.
I was in crisis; laser treatments no longer worked for me, and I could not control my bleeds. My wife and I went to the conference armed with notebooks and learned as much as we could at the sessions. We talked with as many doctors, fellow patients, Cure HHT staff, board members and center directors as we could to learn about potential solutions today and in the future. I went home with a short- and long-term game plan – deciding on the best treatments and the right team to guide me. It led to a new procedure that worked for me and then a second treatment that worked even better. And it led me to finding an HHT Center of Excellence “home base” as well as expert clinicians at other HHT Centers and beyond that have helped me avoid problems and treat new ones.
Read MoreDr. Anthony Anzell Presented with $20,000 Research Grant
The University of Pittsburgh’s Dr. Anthony Anzell Presented with $20,000 Research Grant from Uplifting Athletes Dr. Anzell is among 10 rare disease researchers to be awarded a grant at Uplifting Athletes’ Young Investigator Draft on Feb. 3 at Lincoln Financial Field Pittsburgh (January 9, 2024) — Uplifting Athletes, a nonprofit organization dedicated to serving the…
Read MoreCure HHT Canada now registered as a charitable organization in Canada
We are excited to announce the establishment of Cure HHT Canada as a registered, tax-deductible charitable organization in Canada! We heard your feedback on how important this designation is to you and we’ve worked diligently over the last two years to reach this milestone. The establishment of Cure HHT Canada marks a concentrated effort to expand and increase our support of our community in Canada!
Read MoreE-News: Insider Connection
Check out our latest E-News! Delivered monthly, straight to your inbox – stay up to date on all things HHT including research, clinical trials, webinars, awareness, educational opportunities and more! Sign up today!
Read MoreAnn Trussell: “My promise to my daughters…I will do everything in my power to find a cure!”
Ann Trussell joined the Cure HHT Board of Directors to help ensure the next generation of HHT patients don’t experience the pain and struggles of generations past.
“My promise to my daughters is that as long as I’m able, I will do everything in my power to find a cure,” Ann says. “Children are being born with HHT every day. We owe it to them to do better!”
For Ann and her family, as is all too common with HHT, so many signs and symptoms were overlooked for years. A diagnosis didn’t come until her youngest daughter, Lauren, was born.
Lauren suffered a stroke in utero, and doctors were never able to pinpoint why. As she got older, Lauren began passing out and turning blue. Again, no one seemed to know why. One day when Lauren was 9 years old, it happened and “she wasn’t coming back to us,” Ann remembers. Lauren was taken to Children’s Hospital of Philadelphia’s cardiac care floor where a chest CT would reveal a massive AVM in Lauren’s right lung. Dr. Scott Trerotola, Director of the HHT Center of Excellence at UPenn, was called to review the scans.
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