[Congressional Record Volume 150, Number 53 (Thursday, April 22, 2004)]
[Extensions of Remarks]
[Page E614]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 RECOGNIZING NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS WEEK

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                        HON. WILLIAM L. JENKINS

                              of tennessee

                    in the house of representatives

                        Thursday, April 22, 2004

  Mr. JENKINS. Mr. Speaker, I rise today to ask my colleagues to join 
me in recognizing the week of April 19th as National Primary Immune 
Deficiency Diseases Awareness Week. Primary immune deficiency diseases 
(PIDD) are genetic disorders in which part of the body's immune system 
is missing or does not function properly. The World Health Organization 
recognizes more than 150 primary immune diseases which affect as many 
as 50,000 people in the United States.
  I am familiar with primary immune deficiencies because of a young man 
in my district, Matt Seals, who was born with an extremely rare PIDD 
called X-linked Agammaglobulinemia (XLA), a genetic disorder that 
prevents his body from producing B-cell antibodies that protect him 
from infections. Matt experienced difficulty and delay in diagnosis of 
his primary immune deficiency disease. Despite the recent progress in 
PIDD research, the average length of time between the onset of symptoms 
in a patient and a definitive diagnosis is 9.2 years.
  Those who remain undiagnosed may suffer repeated and serious 
infections and possibly irreversible damage to internal organs. That is 
why it is critical to raise awareness about these illnesses with the 
general public and health care community. I want to commend the Immune 
Deficiency Foundation for its leadership in the areas of education and 
support, and I am proud to join them in recognizing the week of April 
19th as National Primary Immune Deficiency Diseases Awareness Week.

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