The United States Senate Resolution 141 has recognized June 2009 as the first National Hereditary Hemorrhagic Telangiectasia (HHT) month to increase awareness of HHT, also referred to as Osler-Weber-Rendu Syndrome. HHT is a complex autosomal dominant genetic blood vessel disorder that is a long-neglected national health problem that affects approximately 70,000 people in the United States and 1,200,000 worldwide.

HHT is characterized by telangiectases and artery-vein malformations that occur in major organs including the lungs, brain, and liver, as well as the nasal mucosa, mouth, gastrointestinal tract, and skin of the face and hands.

HHT is associated with serious consequences if not treated early. Left untreated, 20% of those with HHT, regardless of age, suffer death and disability. There is widespread lack of knowledge of the disorder among medical professionals and it is estimated that approximately 90 percent of the HHT population has not yet been diagnosed and is at risk for death or disability due to sudden rupture of the blood vessels in major organs in the body.

Yet, the disorder is amenable to early identification and diagnosis. Evidence based interventions by knowledgeable professionals can effectively prevent death and disability. Patients with HHT frequently receive fragmented care from practitioners who focus on one organ of the body, having little knowledge about involvement in other organs or the interrelation of the syndrome systemically. Failure to recognize and address this disorder is costing lives and the U.S. health care system billion of health care dollars.

If you think you or someone you know has HHT, you can contact the HHT Foundation at www.hht.org or 1-800-HHT-6389