[Congressional Record (Bound Edition), Volume 155 (2009), Part 11]
[Extensions of Remarks]
[Pages 14895-14896]
[From the U.S. Government Publishing Office, www.gpo.gov]




       RESOLUTION SUPPORTING A ``NATIONAL HEREDITARY HEMORRHAGIC 
                      TELANGIECTASIA (HHT) MONTH''

                                 ______
                                 

                          HON. RICHARD E. NEAL

                            of massachusetts

                    in the house of representatives

                        Thursday, June 11, 2009

  Mr. NEAL of Massachusetts. Madam Speaker, I rise today to introduce a 
resolution that affects families across America. This resolution 
expresses support for the designation of a ``National Hereditary 
Hemorrhagic Telangiectasia, HHT, Month'' as well as other efforts to 
increase public awareness of the disease. Hereditary Hemorrhagic 
Telangiectasia (HHT) is complex genetic disorder of the blood vessels 
affecting approximately 70,000 Americans. It is characterized by 
malformations that occur in major organs, including the lungs, brain, 
and liver. If left untreated, it can lead to chronic health problems or 
even sudden death due to the rupture of blood vessels in major organs.
  Unfortunately, due to a widespread lack of knowledge of the disorder, 
approximately 90 percent of Americans suffering from HHT currently 
remain undiagnosed. These people are at risk of sudden death or 
becoming disabled. However, tests exist for the early detection and 
diagnosis of HHT and certain treatments are available for those 
suffering from the disease. It is estimated that between 20 and 40 
percent of deaths and disabilities resulting from HHT would have been 
preventable if the condition had been diagnosed.
  This resolution aims to reduce future HHT-related deaths and 
disabilities. The HHT Foundation International's designation of a 
``National Hereditary Hemorrhagic Telangiectasia, HHT, Month'' and 
other efforts to educate the public should increase public awareness of 
the disease, leading to more HHT testing and fewer instances of 
undiagnosed HHT. Additionally, support for further research will 
improve outcomes, reduce costs, and increase

[[Page 14896]]

the quality of life for those living with HHT, while also searching for 
a cure for the disorder.
  This important bill will decrease the suffering of families affected 
by this devastating disease. It is my goal to improve the quality of 
life of the approximately 70,000 Americans suffering from HHT. I urge 
my colleagues to support this resolution to make the public aware of 
this national health problem.

                          ____________________