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A better future starts now

Angela Sergott
I lost my sister to HHT when I was one year old. I lost my mother to the same disease twenty years later. In neither instance was my family made aware of the details or dangers of HHT. We didn't even know it existed. Both tragedies were regarded with the same sense of mysterious imminence. There was nothing to be done. More than two decades later, my nephew had been recently treated for lung AVMs using a technique called embolization. I visited Dr. Robert White and after examining my medical history, he was able to diagnose me with HHT and successfully embolize several previously undetected pulmonary AVMs. My family now carefully monitors our HHT and fully understands the importance of regular care.

It is devastating to consider how life could have been for my family had we only been able to recognize the symptoms of HHT. I could have grown up with an older sister, could have known parents who were not stricken with grief. Dr. White emphasizes over and over the importance of family health history – it is one of the most crucial aspects of medical care. We cannot change what happened in the past, but we can all be a part of a better future for everyone affected by HHT. This is the mission of Cure HHT, and it is my own experience, and the knowledge that we can prevent so much needless loss, that has compelled me to commit myself to this organization.

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Marisa Maccia
Your story is inspirational


Leann DuPont
I pray for your family. I have a similar situation. My grandmother had it, none knew about this disorder. My dad had it, but it was too late he got a brain abscess.i have been treated twice for lung AVM's. My oldest son has been treated for lung AVM's. Thank you to the Center for Exellence at UNC in North Carolina andvDr. Burke. The regular family doctors don't know about it. I wish they were more educated.

When HHT touches someone close to you, it's natural to want to share their story with others.

HHT is a relentless disease that affects over one million people around the world. Many of those people are robbed of the opportunities that would allow them to lead a full and normal life. Cure HHT is the only organization in the world dedicated solely to research, education, and advocacy that will allow us to find a cure for this disease. You can make a tremendous impact on our mission and honor a loved one by creating a Memorial or Tribute.

Whether your family has managed HHT for generations or you are the first to be diagnosed, everyone has a story to tell. One of the dynamics that keeps our small community so strong is the constant opportunity HHT families have to relate to one another.