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Campaign Raises Awareness About Primary Immunodeficiency

By Christina Stile

On the Front Page...

Their warning signs often go unrecognized. They present themselves as routine, recurrent childhood illnesses such as ear infections, sinus infections and bronchitis; they show little improvement when treated with standard antibiotics. They are the nearly 80 hereditary disorders collectively known as primary immunodeficiency (PI). To raise awareness about this condition and its 10 warning signs, Rep. Nita Lowey (D-NY) joined NIH officials and Fred and Vicki Modell of the Jeffrey Modell Foundation on Capitol Hill to launch a national information campaign about PI.


"Our opportunity lies in continuing to conduct and support cutting edge research that has led to new and innovative ways to treat and even correct many primary immunodeficiencies," said Dr. Duane Alexander, director of NICHD. "Our challenge is to increase awareness of the warning signs of primary immunodeficiencies among parents, health professionals and the public so that no child with this condition goes undiagnosed."

PI comprises about 80 disorders that hinder the body's ability to fight infection. The widely varied symptoms of these disorders leave thousands of PI sufferers undiagnosed or misdiagnosed. Because PI infections don't respond to standard treatments, a misdiagnosis can result in death. This problem is especially dangerous among those in minority and economically disadvantaged communities because they often do not have access to regular health care services or are uninsured.

A poster announcing the 10 Warning Signs for Primary Immunodeficiency takes center stage at its unveiling during an event on Capitol Hill. Also shown are (from l) Fred Modell, from the Jeffrey Modell Foundation (JMF); Debbie Longo, whose 4-year-old son, Christopher, died last year from undiagnosed PI; Vicki Modell, also of JMF; Dr. Duane Alexander of NICHD; Kareem Edwards; Lawrence Jackson, who has been successfully treated for PI for the last 18 years; and Theresa Brown Jackson, Lawrence's mother and Kareem's grandmother.

One goal of the campaign, explained Alexander, is to increase awareness about PI and its warning signs among health professionals and the public to allow better diagnoses and treatments.

Fred and Vicki Modell established the Jeffrey Modell Foundation in memory of their son, Jeffrey, who was born with an inherited immunodeficiency. Since its founding, the JMF has remained active in supporting research, educating physicians and patients and raising public awareness about immunodeficiencies. Last year, NICHD, in conjunction with the JMF, published a booklet about PI diseases, entitled Primary Immunodeficiency: When the Body's Defenses Are Missing. This publication has proven helpful to those who have PI, or suspect they have it, and their families.

To alert pediatricians to the awareness campaign, Alexander sent a letter to the 50,000 members of the American Academy of Pediatrics in early September. Included with the letter was a copy of The 10 Warning Signs, a poster produced by the JMF that outlines the 10 most common symptoms of PI, in both English and Spanish. NICHD also sponsored grand rounds at the Clinical Center on Sept. 20 on Severe Combined Immunodeficiency (SCID). Topics of the meeting included the known causes for SCID, its features and the role of early diagnosis in its treatment. In May, the institute sponsored the Gene-based Understanding of X-linked PI Disorders Symposium at the meeting of the Pediatric Academic Societies and the AAP.

"We are happy to be part of this effort," Alexander said. "As a result of this research and the public education effort we are launching today, patients with PI can look forward to a much brighter future."

The event on Capitol Hill spotlighted an NIAID grant that will address gaps in knowledge about PI, including its prevalence among minority and unin-sured populations. NICHD, NIAID and NCI are providing equal funding toward this grant. The public-private partnership sponsoring the campaign includes NIH, the JMF, the Centers for Disease Control and Prevention, the American Red Cross and industry groups.

Campaign materials also include a parent information kit and a children's storybook. For online versions of the materials, visit the JMF web site at

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