“My own family was shattered by HHT,” says Cure HHT Executive Director Marianne S. Clancy, “The loss of my 14-year-old sister, my brother’s lung operation, my mother’s death at age 64 when I was 21."
Monkton, MD (PRWEB) May 04, 2015
HHT is a rare but cruel and unrelenting disease, affecting families for generations. While it can have seemingly mild symptoms like frequent nosebleeds, it can result in disabling and catastrophic events. Hereditary Hemorrhagic Telangiectasia (HHT) is a hereditary disorder resulting in the formation of blood vessels that lack normal capillary connections between an artery and a vein. These abnormalities in the nose can cause frequent, severe nosebleeds, but may also be present in the lungs, brain and liver. They are susceptible to rupture, and can result in brain hemorrhage, stroke and death. It is estimated that less than 1% of the general population in the US has even heard of HHT, and only 10% of those with HHT are aware that they have it. 1.4 million people worldwide have HHT including approximately one in 60,000 people in the U.S. but the lack of HHT awareness even in the medical community means that it can take up to 30 years for a person to be diagnosed as having the disease. For more information visit http://www.CureHHT.org
Cure HHT was founded in 1991 as the HHT Foundation International. The organization is at the epicenter of the national and global effort to advocate for patients and families, raise awareness of HHT, catalyze and sponsor critical research, create lasting collaborations, and advance treatments. Although Cure HHT has created nearly 20 Centers of Excellence in the U.S. and Canada* (Editor’s Note, below) to research and treat this devastating disease, research is woefully underfunded. The National Institutes of Health (NIH) currently spends only half-a-million dollars on research for HHT: but spends as much as $75 million a year each on other rare diseases that affect a similar number of people, such as ALS, Cystic Fibrosis and Huntington’s.
As part of its ongoing and growing advocacy with the United States Congress and internationally, and its efforts to bring more attention to the human impact of HHT, Cure HHT has established June as “HHT Awareness Month”. Cure HHT is reaching out to both the public to help identify the 90% of those who have the disease but are still undiagnosed, and to continue to educate the medical community on the HHT warning signs and the findings of the international HHT research community. For detailed information visit http://curehht.org/?s=awareness+month
Also in June, for the first time in the United States, Cure HHT will host the International HHT Scientific Conference on Captiva Island, Florida June 11-14. This is the 11th biennial conference on HHT, providing a venue for clinicians and scientists to discuss the most recent advances in research and therapeutics in the field of HHT. The conference provides an opportunity for strengthening the collaborations between clinicians and scientists with the aim of finding better treatments, and ultimately a cure, for HHT. For detailed information, visit http://www.hhtconference.curehht.org
“My own family was shattered by HHT,” says Cure HHT Executive Director Marianne S. Clancy, “The loss of my 14-year-old sister, my brother’s lung operation, my mother’s death at age 64 when I was 21, extensive nosebleeds and medical emergencies for cousins, aunts and uncles. If a thorough family history had been taken at any point, there might have been a realization that nosebleeds, lung hemorrhages, deaths in adolescence, gastrointestinal bleeding, strokes, brain abscesses, and migraines in multiple generations were more than just coincidental. Connecting the dots would have changed the lives of those impacted and those who loved them.”
Editor’s Notes:
- Additional background, personal case stories, and the most recent developments in the field of HHT are available. Support for feature stories on request.
- Interviews available with Executive Director Marianne S. Clancy, as well as with patients, families, clinicians and scientists.
- Cure HHT Centers of Excellence are located in Augusta, Georgia; Baltimore, Maryland; Chapel, Hill, North Carolina; Cleveland, Ohio; Dallas, Texas; Denver, Colorado; Little Rock, Arkansas; Los Angeles, California; Milwaukee, Wisconsin; Montreal, Canada; New Haven, Connecticut; Philadelphia, Pennsylvania; Portland, Oregon Rochester, Minnesota; Salt Lake City, Utah; San Diego, California San Francisco, California; St. Louis, Missouri; and Toronto, Canada.