[Congressional Record Volume 152, Number 23 (Tuesday, February 28, 2006)]
[Extensions of Remarks]
[Page E215]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




        RECOGNIZING FEBRUARY AS NATIONAL MARFAN AWARENESS MONTH

                                 ______
                                 

                      HON. MICHAEL G. FITZPATRICK-

                            of pennsylvania

                    in the house of representatives

                       Tuesday, February 28, 2006

  Mr. FITZPATRICK of Pennsylvania. Mr. Speaker, I rise today to speak 
in recognition of February as National Marfan Awareness Month and to 
pay tribute the thousands of people across the nation who are living 
with the Marfan syndrome and related connective tissue disorders.
  The National Marfan Foundation is celebrating it's twenty-fifth 
anniversary this year and continues to dedicate itself to saving lives, 
and improving the quality of life for individuals and families affected 
by Marfan syndrome and related disorders by raising awareness, 
providing support and fostering research.
  This year marks the 15th annual National Marfan Awareness Month, a 
national awareness campaign which focuses on Marfan syndrome, a genetic 
disorder of the connective tissue that can affect the skeleton, eyes, 
heart and blood vessels. Because of the disorder, the aorta, the large 
artery that carries blood away from the heart is weakened and prone to 
enlargement and rupture, which is often fatal.
  It is estimated that 200,000 people in the U.S. are affected by the 
Marfan syndrome or a related connective tissue disorder. Marfan 
syndrome is often hereditary, but 25 percent of affected people are the 
first in their family to have the disorder. It affects both male and 
females and all ethnicities. Thousands do not even know that they are 
affected and if left undiagnosed, it can result in an early sudden 
death from aortic dissection.
  There is no cure for Marfan syndrome, but with an early diagnosis, 
proper treatment and careful management of the disorder, the life span 
can be extended into the 70s. Without a diagnosis and treatment, people 
may die as early as their 20s, 30s or 40s.
  In addition, to National Heart Month, February was designated 
National Marfan Awareness Month because of President Abraham Lincoln's 
Birthday. Lincoln is believed to have been affected by Marfan syndrome 
because of the many outward signs of the disorder he portrays. People 
with this condition are frequently taller than other non-affected 
members of their family with disproportionately long limbs, fingers and 
toes. They often have an indented or protruding chest bone, a curved 
spine, flat feet, a high arched palate and loose joints.
  Other famous people with the Marfan syndrome include Jonathan Larson, 
the Tony Award-winning playwright of the Broadway musical Rent; Flo 
Hyman, captain of the U.S. Olympic Volleyball team who won a gold medal 
in 1984, Charles de Gaulle, Rachmaninoff, and Mary Queen of Scots.
  Mr. Speaker, according to the National Marfan Foundation, in my 
district in Pennsylvania there are approximately 190 families that have 
to live with this disorder and the fear of dying at an early age.
  According to the Centers for Disease Control, approximately 14,000 
people die each year of aortic aneurysms and dissections, 20 percent of 
which can be contributed to those carrying a genetic disorder such as 
the Marfan syndrome.
  Due to lack of medical awareness about the disorder, many people 
still die undiagnosed and untreated.
  I rise today to commend those working in my district and State who 
work tirelessly on this issue in the hopes of one day finding a cure 
for Marfan syndrome.
  Mr. Speaker, I encourage my colleagues to join me and the National 
Marfan Foundation in raising awareness of this potentially life 
threatening disorder. I look forward to working with members on both 
sides of the aisle to increase federal support for critical research 
and prevention programs aimed at improving the quality of life for 
Marfan syndrome patients and their families.

                          ____________________