[Congressional Record Volume 150, Number 53 (Thursday, April 22, 2004)]
[Extensions of Remarks]
[Page E608]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




IN RECOGNITION OF NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS 
                                  WEEK

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                           HON. TAMMY BALDWIN

                              of wisconsin

                    in the house of representatives

                        Thursday, April 22, 2004

  Ms. BALDWIN. 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. Fortunately, 70 percent of PIDD 
patients are able to maintain their health through regular infusions of 
a plasma product know as intravenous immunoglobulin. IGIV helps bolster 
the immune system and provides critical protection against infection 
and disease.
  I am familiar with primary immune deficiencies because of a 
constituent of mine who has a primary immune deficiency disease called 
selective antipolysaccharide antibody deficiency syndrome. Linda 
Keegan, like so many primary immune deficiency patients was not 
diagnosed until adulthood. Linda spent a great part of her life winding 
her way through the health-care system, suffering from recurrent sinus 
and ear infections, sinus surgery, and the mid-life onset of asthma. 
She felt that virtually nobody with a medical degree of any sort was 
willing to understand or believe that she was unable to resist 
infections in the same way that most people do. She spent her life 
being sick and on antibiotics. Finally, one morning in an urgent care 
unit, a physician's assistant listened to her medical history, and said 
``there might be something wrong with your immune system.'' Linda took 
it upon herself to research the immune system on the Internet, and 
eventually met an immunologist who diagnosed her correctly, in her mid-
40's.
  Linda is eligible for IGIV therapy, but so far a daily dose of two 
antibiotics is preventing sinus and ear infections, and her asthma 
symptoms have become sporadic, rather than chronic. She knows that 
someday she might have to depend on IGIV, but for now she is trying to 
make good lifestyle choices and keep a positive attitude. One way Linda 
has done this is by becoming a volunteer peer contact for the Immune 
Deficiency Foundation. In my home State of Wisconsin, Linda provides 
information and support to other PIDD patients or parents who have 
children with PIDD.
  Linda is not unique with the delay in diagnosis of her 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 of PIDD is 9.2 years. In the interim, those 
afflicted may suffer repeated and serious infections and possibly 
irreversible damage to internal organs. That is why it is critical that 
we raise awareness about these illnesses within the general public and 
the health care community.
  Mr. Speaker, I commend the Immune Deficiency Foundation for its 
leadership in this area and I am proud to join them in recognizing the 
week of April 19th as National Primary Immune Deficiency Diseases 
Awareness Week. I encourage my colleagues to work with us to help 
improve the quality of life for PIDD patients and their families.

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