What the HHT?
A blog for the HHT community
News
Donegal News: Letterkenny man shares story to mark Rare Disease Day
Donegal News (Ireland). Letterkenny man shares story to mark Rare Disease Day – “Letterkenny man Michael MacGinty, who suffers with a rare blood disease, has shared his story to mark Rare Disease Day. He highlighted the importance of having a conversation about rare diseases, which he says are not as rare as rare sounds.”
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.”…
Read MoreBusiness Insider: 39-year-old mother of three in the UK, suffered from daily nosebleeds
March 9, 2022 | Business Insider | By Lauren Crosby. After a lifetime of constant nosebleeds, a woman found out she had a rare genetic disease – “Kate James, a 39-year-old mother of three in the UK, suffered from daily nosebleeds throughout most of her life until she was given a diagnosis she never expected.…
Read MoreHHT on the TODAY Show: “Mommy I love you. My head hurts.”
Alexis was diagnosed with HHT at the age of 2 1/2 and underwent routine screenings at her local HHT Center of Excellence. Her life changed in an instant when she was rushed to the emergency room. The last thing she said to her mother before her life completely changed was, “Mommy I love you. My…
Read MoreWFMZ-TV 69 News reports on HHT-HTC Openings
There’s nothing we relish more than seeing news coverage about HHT. We were so excited to have WFMZ-TV Channel 69 report on our two newest HHT-HTC Treatment Centers that opened in Indiana and Michigan! Not only did the reporting share the good news about access to care but gave an overview of HHT and its…
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