National Marfan Awareness Monthby Representative Michael G. Fitzpatrick
Posted on 2013-02-15
in the house of representatives
Friday, February 15, 2013
Mr. FITZPATRICK. Mr. Speaker, I rise to raise awareness of Margan
syndrome and related heritable connective tissue disorders by observing
National Marfan Awareness Month.
Marfan syndrome is a rare genetic condition affecting roughly 1 in 5,000 Americans. Marfan syndrome impacts the connective tissue throughout the body, which can lead to various health issues. Some of these health issues can be disabling or even fatal. In Marfan patients the largest artery in the body, the aorta, can weaken, enlarge, and rupture. By raising awareness today I seek to promote recognition and early diagnosis of Marfan syndrome so that serious cardiac events can be prevented.
Early diagnosis and proper treatment are the keys to managing Marfan syndrome and living a full life. I am pleased to announce that the American Heart Association and the American College of Cardiology have released new treatment guidelines for thoracic aortic disease. Since recognition and proper treatment are the major components of preventing the most serious health issues, I call on the Centers for Disease Control and Prevention to work closely with the Marfan syndrome community to raise awareness of these conditions and the new treatment guidelines.
While there is currently no cure for Marfan syndrome, efforts are underway to enhance our understanding of the condition and improve patient care. I applaud the National Institutes of Health, particularly the National, Heart, Lung and Blood Institute and the National Institute of Arthritis and Musculo skeletal and Skin Diseases for their research efforts in this regard. I encourage NIH to expand research efforts in this area moving forward.
On behalf of the Marfan syndrome and related heritable connective tissue disorders community, I urge my colleagues to join me in recognizing February as National Marfan Awareness Month.