[Congressional Record Volume 150, Number 51 (Tuesday, April 20, 2004)]
[Extensions of Remarks]
[Page E571]
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. SHERROD BROWN

                                of ohio

                    in the house of representatives

                        Tuesday, April 20, 2004

  Mr. BROWN of Ohio. Mr. Speaker, I am pleased to join my colleagues in 
recognizing the week of April 19 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 intravenuous immunoglobulin. IGIV helps bolster the 
immune system and provides critical protection against infection and 
disease.
  I am familiar with primary immune deficiencies because a family in my 
district, the Gargaszs, have a son Dylan who has a primary immune 
deficiency disease. Dylan was born looking healthy, but by his first 
month checkup he had a raging ear infection, followed by chronic 
infections throughout his first year of life. Additionally, Dylan was 
failing to thrive and grow like a normal child. Dylan spent at least 
one day a week in the doctor's office, and was hospitalized with 
pneumonia five times by 18 months old. Finally, at 18 months, Dylan's 
mother took him to Rainbow Babies and Children's Hospital, where an 
immunologist finally diagnosed him with a primary immune deficiency 
disease. Dylan started his IGIV therapy once a week, and now at 6 years 
old, is doing relatively well. His younger brother and mother are now 
being tested to see if they have a primary immune deficiency disease.
  Dylan is not unique with the 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 of PIDD is over 9 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 in the general 
public and the health care community.
  Mr. Speaker, I want to thank the Immune Deficiency Foundation for its 
leadership in this area and I am pleased to join them in recognizing 
the week of April 19 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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