Children with Primary Immune Deficiency Disorders have a new option for treatment, with the new Jeffrey Modell Diagnostic Center at SSM Cardinal Glennon Children’s Medical Center.
Primary Immunodeficiency Disorders (PIDD) are defects in the immune system that are carried through the genes. More than 150 PIDD have been identified to date and affect as many as 1 million Americans and 10 million people worldwide. They range widely in severity and type of treatment. PIDD are characterized by infections that can often be recurring, persistent, debilitating and chronic.
The Jeffrey Modell Diagnostic Center at SSM Cardinal Glennon is one of 19 new centers funded worldwide through 2010 grants from the Jeffrey Modell Centers Network. The network now includes 72 funded diagnostic and research centers around the world.
“The funding of our center means that Cardinal Glennon is a preferred referral center for treatment of children with these diseases,” says Alan Knutsen, M.D., an immunology specialist and medical director of the Jeffrey Modell Diagnostic Center at Cardinal Glennon. “We are grateful for the support of the Jeffrey Modell Foundation and look forward to the increased opportunity to promote awareness of Primary Immunodeficiencies to the public and medical providers.”
Patients like Alexis Hagemeyer have experienced tremendous results from the care of Cardinal Glennon’s immunology specialists. When Alexis got sick back in 1996, doctors weren’t able to diagnose her at first.
“She just got diagnosed with cystic fibrosis over and over,” mom Sara Hagemeyer said. “It was when we started coming here that Dr. Knutson said ‘She has no immune system.’”
Alexis was diagnosed with severe combined immunodeficiency and received transplanted cord blood cells. She still returns for visits with her doctors at Cardinal Glennon, but Alexis is very much a normal 14-year-old girl. She plays golf, participates in 5K runs and wants to be a veterinarian.
“There were a lot of people in the right place at the right time,” Hagemeyer said of her daughter’s care. “We’re very lucky to have such a great hospital in our own backyard.”
The Jeffrey Modell Foundation will only add to the hospital’s capabilities. The Jeffrey Modell Foundation was established by Vicki and Fred Modell in memory of their son Jeffrey, who died at the age of 15 of pneumonia due to an underlying Primary Immunodeficiency disease. The Foundation is dedicated to early and precise diagnosis, meaningful treatments, and ultimately cures of Primary Immunodeficiency Diseases.
Financial support for the grant was provided by CSL Behring, a company that manufactures and markets a range of plasma-derived and recombinant products and related services.
“CSL Behring is pleased to be a part of making this new Center a reality for young patients with primary immunodeficiency disease,” said Robert Lefebvre, Vice President and General Manager, U.S. Commercial Operations at CSL Behring. “Increasing the availability of resources for treatment and education is a key mission for our company, and we are gratified to once again work with The Jeffrey Modell Foundation to fulfill that mission.”
Last year, the Immunology program at Cardinal Glennon followed 473 patients. Some of the diagnoses are SCIDS (severe combined immune deficiency), Wiskott-Aldrich, chronic granulomatous disease, X-linked agammaglobulinemia and common variable immunodeficiency, DiGeorge anomaly, along with other immune deficiencies. Seventy-six of the Cardinal Glennon patients receive regular infusions of gammaglobulin to control their diseases and symptoms. The Internal Medicine Allergy & Immunology division at Saint Louis University plans to establish an Adult Primary Immunodeficiency Program under the leadership of Dr. James Temprano.