What the HHT?
A blog for the HHT community
Posts by Cure HHT
Part I: Dr. Old School, Diagnosis and Denial
Maybe this will sound familiar to you. Pesky nosebleeds that, over time, become prevalent, preoccupying and pernicious. I have suffered from nosebleeds since I was a child. Other than that, I had been in excellent health, so my doctor never thought much of them. By my late thirties, the nosebleeds had gotten so bad that…
Read MoreComprehensive HHT Resource: Living with HHT Book
By Sara Palmer, PhD In this recently published book, psychologist Sara Palmer, who has HHT herself and is an expert in helping people cope with health conditions, draws on current research as she thoroughly describes the symptoms of HHT, explains how the diagnosis is made (and often missed), and details treatment options. While addressing the medical aspects of…
Read MoreSharing to make a difference
Recently I had an amazing opportunity to share my HHT story with a group of researchers from Recursion Pharmaceuticals as well as local medical professionals in the Salt Lake city area. It all started by saying ‘Yes’ to a Facebook invitation. I saw on Facebook that Cure HHT was looking for a patient to volunteer…
Read MoreCure HHT Helps Raise Awareness for Pulmonary Hypertension
Did you know that people living with HHT are at risk of developing Pulmonary Hypertension (PH)? Cure HHT has partnered with the Pulmonary Hypertension Association (PHA) to raise awareness about the connection of these two diseases. To learn more about how HHT and PH are connected, check out our HHT and PH resources in the Cure…
Read MoreMy Experience with Online Community Groups + HHT: The Good, the Bad and the Ugly (Part 3)
Introduction: With the prevalence of social media, it is almost impossible not to be connected these days. One of the most popular ways to connect with others is through community support groups, like the ones for HHT on social media sites. Most of the time, I think these groups are what our HHT community…
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