"He's a Kid" is not a Diagnosis, Could it be Primary Immunodeficiency?

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Dec 04, 2013, 09:00 ET

NEW YORK, Dec. 4, 2013 /PRNewswire/ -- Does your pediatrician or family practitioner tell you that your son or daughter "is a kid and all kids get sick"? It may not be a complete medical diagnosis. The underlying condition could be a Primary Immunodeficiency (PI), a disorder in which children and adults suffer with unexplained chronic and recurring infections. When left undiagnosed the immune system remains compromised, leading to a lifetime of chronic disease, permanent organ damage, or even death.

10 Warning Signs of Primary Immunodeficiency. (PRNewsFoto/Jeffrey Modell Foundation) (PRNewsFoto/JEFFREY MODELL FOUNDATION)

Letter to the Physician to accompany the 10 Warning Signs Poster. (PRNewsFoto/Jeffrey Modell Foundation) (PRNewsFoto/JEFFREY MODELL FOUNDATION)

50,000 letters with the 10 Warning Signs and a message for physicians about PI went out this week in an effort to raise awareness nationwide.

PI is not rare. The U.S. National Institutes of Health report that as much as 1-2 percent of the U.S. population is affected. That's 3-6 million Americans, and about 98-99 percent do not even know that they have it. The condition is more prevalent than childhood Leukemia and Lymphoma combined and four times the incidence of Cystic Fibrosis.

With an even higher prevalence than these well-known diseases, the urgency to increase physician awareness is at an all-time high. Recently, the Jeffrey Modell Foundation (JMF) sent 10 Warning Signs posters across the nation to pediatricians, family physicians, internists, infectious disease specialists, pulmonologists, emergency room physicians, and other subspecialists. The Warning Signs describe often overlooked symptoms such as recurring ear and sinus infections, failure to clear infections with antibiotics, failure of an infant to gain weight or grow normally, and a family history of PI. Along with the Warning Signs posters, a letter was sent asking physicians to, Test! Diagnose! Treat! as early as possible.

The JMF website, www.info4pi.org, has the 10 Warning Signs Poster and if you, your family, or someone you know is affected by two or more of the Warning Signs, speak to a physician about the possible presence of an underlying Primary Immunodeficiency.

The 10 Warning Signs are now translated and distributed in 45 countries increasing physician awareness worldwide. Parents around the globe have contacted the Foundation to express their appreciation that they are no longer being told, "Relax…It's normal…They're just kids."

About Jeffrey Modell Foundation
Vicki and Fred Modell established the Jeffrey Modell Foundation in 1987, in memory of their son Jeffrey, who died at the age of fifteen from complications of Primary Immunodeficiency – a genetic condition that is chronic, serious, and often fatal. JMF is a global nonprofit organization dedicated to early diagnosis, meaningful treatments and, ultimately, cures through research, physician education, public awareness, advocacy, patient support, and Newborn Screening. There are now 556 physicians at 234 Diagnostic and Research Centers in 196 cities and 78 countries spanning 6 continents in the Jeffrey Modell Centers Network.

For more information about PI, visit www.info4pi.org or email the Jeffrey Modell Foundation at [email protected].

Contacts:
Vicki and Fred Modell, Co-Founders
Jeffrey Modell Foundation
[email protected]
212-819-0200

Image with caption: "10 Warning Signs of Primary Immunodeficiency". Image available at: http://photos.prnewswire.com/prnh/20131204/MM26863-INFO-a

Image with caption: "Jeffrey Modell Foundation". Image available at: http://photos.prnewswire.com/prnh/20131204/MM26863LOGO-b

PDF available at: http://origin-qps.onstreammedia.com/origin/multivu_archive/ENR/FX-MM26863-20131204-1.pdf

SOURCE Jeffrey Modell Foundation