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What the HHT?

A blog for the HHT community

Uplifting Athletes Support the Rare Disease Community

What does the NFL Draft, WWE star Joe Spivak (aka Tank Ledger), and HHT research have in common? Before Feb 2024, nothing! Allow me to explain this improbable connection and introduce you to another rare disease advocacy organization called Uplifting Athletes.  

Cure HHT’s draft pick was Dr. Anthony Anzell. The Uplifting Athletes scientific advisory board carefully reviewed applications and grant proposals from all researchers and we were very pleased when Dr. Anzell was selected to represent HHT and receive funding to support his work. Dr. Anzell is an HHT patient himself and after receiving his doctorate, he began studying HHT as a postdoctoral scholar.  Anthony was diagnosed at age 15 after multiple trips to the emergency room with horrible migraines. It took a courageous and bold mother to advocate for her son and finally he received scans that showed his brain was covered in abscess, his liver was also infected, and he had many pulmonary AVMs. After three brain surgeries, a liver surgery, and embolization of all the vessel malformations in his lungs, Anthony squeaked out alive. I wouldn’t say he was unphased because he healed and began doing crazy endurance events like ultra marathons, ironman races, and incredibly long swims all in the name of HHT awareness. Now, in addition to running for awareness, he is chasing a cure for HHT through research.  

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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.

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Ann 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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Gabby Choi: There is so much power in patients advocating for themselves…

As a kid, Gabby Choi remembers spending hours in the bathroom with her mother, who also had HHT, as she dealt with her hemorrhagic nosebleeds that seemingly kept getting worse and worse.

It had a significant impact on her mom’s quality of life – with the frequent bleeds interfering with work or preventing her from wanting to socialize in fear of a bad bleed striking.

Sadly in 2017, Gabby’s mother Julia was diagnosed with pancreatic cancer. Because of her progressed HHT, she didn’t qualify for any of the clinical trials that could have given her a better chance at fighting the cancer.

Gabby’s own HHT symptoms remained relatively mild during her childhood. She’d go on to swim collegiately at Emory University and receive her MBA from Harvard Business School, but the experiences with her mother motivated her to get more involved with the HHT community and help in any way she could.

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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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