SCID is commonly known as "bubble boy disease" after David Vetter, a boy who lived in a germ-free bubble for 12 years. Often called a pediatric emergency, SCID is a treatable but serious primary immunodeficiency disease in which babies fail to develop a functioning immune system. Children with SCID are generally born without T-cells, the specialized white blood cells made in bone marrow to fight infections, leading to extreme susceptibility to illness. They appear healthy at birth but without treatment, usually by bone marrow transplantation, most children with SCID will die of infections before age 2. When treatment is done in the first months of life, babies have more than a 90% survival rate, necessitating the use of newborn screening.
Over 50% of babies born in the U.S. are being screened for SCID and dozens of infants have been diagnosed in states already performing this screening test, giving these babies the opportunity for early treatment and the chance of a normal, healthy life.
"We are so happy that babies in Washington will be screened for SCID," said Marcia Boyle, IDF President & Founder, "We must continue to work to ensure that newborn screening for SCID is established in all 50 states so that all babies, no matter where they are born, have the chance at a healthy life."
Newborn screening for SCID uses the same dried blood spots currently collected from all babies to screen for a variety of inborn conditions. In 2010, Secretary of Health and Human Services Kathleen Sebelius recognized the urgency of this issue and recommended that SCID be added to the uniform newborn screening panels in all 50 states and territories.
About the Immune Deficiency Foundation
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. For more information, contact IDF at 800-296-4433 or[email protected].
Web Site: http://www.primaryimmune.org
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