I came to Cure HHT as many within our community have - 22 years ago, I was newly diagnosed with a disease I knew nothing about. I had three young children and had seen my mother and a sister pass away suddenly, with no explanation. I was terrified.
HHT (Hereditary Hemorrhagic Telangiectasia) is a genetic disorder resulting in abnormal and tangled blood vessels (referred to as AVMS’) affecting the arteries and veins in several major organs of the body. These vessels are fragile and rupture: nosebleeds are the most common symptom. Sudden rupture of the vessels in the brain and lung results in sudden hemorrhage, stroke or death. These events can be prevented and treated effectively-however, 90 percent of the population remains undiagnosed. Half of the HHT population is chronically anemic due to nose and intestinal bleeding. Many families have histories of sudden death, stroke, and transfusions and do not realize that these events are all connected.
My family and I were fortunate that an organization, still in its infancy, was able to offer us comfort, educational resources and direct us to the best doctors in the country. But my relief was tinged with frustration - so few people knew about HHT and even experts lacked the support and funding they needed to improve diagnosis and treatment. For 10 years, a small group comprised of members of the board of directors, all of us affected in some way by HHT, worked every day to spread awareness and advocate for HHT families worldwide. I was asked to take on the role of executive director and now, many years later, it is still an enormous privilege to serve this community.
This year, Cure HHT is celebrating 25 years of commitment to awareness, advocacy, research and education. It’s because of the dedication and support of the HHT community that the last twenty five years have been full of discoveries and advances.
For 25 years, Cure HHT has been the foundation supporting families, investing in transformational research and increasing access to expert care through creation of HHT centers of excellence worldwide. Cure HHT increases education and awareness in the medical community and the public. We are confident that a cure is on the horizon. Because of the engagement of our families, we are able to save lives around the world every day. This is the Year of Empowerment for Cure HHT.
We will not give up. Together, we can change the face of HHT.
Marianne S. Clancy, RDA, MPA is the executive director of Cure HHT