My HHT story, By NANCY SHERMOEN

By NANCY SHERMOEN, International Falls

I have been dealing with serious health issues for the past 38 years. Finally, in 2002 I learned the cause for many of my health challenges. While visiting my mother in St. Cloud, I had a spontaneous severe nose bleed. An ear, nose and throat physician that treated me in St. Cloud advised me to seek help at an HHT Center of Excellence. There were eight centers to choose from and I went to the HHT Center of Excellence at the University of California at San Diego. It was there that I learned I had a potentially fatal, but treatable genetic disorder called hereditary hemorrhagic telangiectasia, or HHT. My disorder manifested with arteriovenous malformations in my lung.
After undergoing multiple treatment procedures, I have committed myself to increasing education and awareness of the disorder by devoting many hours to my position on the board of directors of the Maryland-based Hereditary Hemorrhagic Telangiectasia Foundation International, a nonprofit organization that supports patients and their families and educators medical professionals about the disorder.
My goal is to find support and funding so that researchers and physicians and can improve treatment and management of HHT symptoms and possibly find a cure for myself, my children, grandchildren and everyone who has HHT. Through improved awareness and education of physicians, school nurses, dentists, and patients, the signs and symptoms can be detected early and treated to prevent catastrophic medical consequences, disabilities, or loss of life.
The multi-system blood vessel disorder leads to cerebral and pulmonary arteriovenous malformation or AVMs — essentially a tangle of veins and arteries that compromises the flow of blood and oxygen in the body and potentially cause stroke, hemorrhage, aneurysm and death — as suffered by U.S. Sen. Tim Johnson (D-S.D.), producing his stroke this past December. Sudden death or disability occurs in 20 percent of children and adults but is largely preventable with proper intervention.
Additionally, the disorder causes more minor vascular malformations in the nose, liver and gastrointestinal tract, expressing itself in nosebleeds, bleeding in the gastrointestinal tract and telangiectases in the skin of the hands, face and mouth.
It is passed on as a dominant gene, half of children of a parent with the disorder will inherit it. About one in 5,000 people have it, or 1.2 million worldwide, though 90 percent go undiagnosed because of a lack of awareness. Due to our fragmented healthcare system and a lack of understanding about HHT by many healthcare professionals, when people seek help for HHT related problems, they are usually treated for their immediate symptoms only. They are often only treated for their nosebleed or other symptom, when they could have a brain AVM or a pulmonary AVM, which can cause a stroke or even death.
In partnership with the National Institute of Health and the Center for Disease Control and Prevention, the HHT Foundation continues to seek governmental assistance with funding for education and research about this silent killer and to sustain the eight specialized treatment centers operating in the United States. With these goals in mind, myself and 40 other HHT foundation members, will take the campaign to Capitol Hill this week. I have appointments to speak with Sen. Amy Klobuchar (D-MN) and Rep. Jim Oberstar (D-MN 8th) or their staff about the disorder and the possibility of gaining federal funding for this disease. Others are meeting with the members of Congress from their home states in an effort to further this critical mission.
So far, all monies raised for research and treatment have been privately raised by the foundation. There are many disorders that are less prevalent but receive millions of dollars in federal funding. This is the only genetic condition known where treatment is available to prevent medical consequences and significantly reduce health care costs among this large population that is unknowingly at risk.
Anyone interested in finding out more about HHT or making a donation to the HHT Foundation should contact me, Nancy Shermoen, at 218-285-7050 or nlshermoen@hotmail.com, or go to www.hht.org.