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Stepping up to find a cure for immune deficiencies

09/02/2014 07:54PM ● Published by Lev

By John Chambless

Staff Writer

Imagine feeling sick, all day, every day.

That was a way of life for Landenberg resident Chuck Lage for the first couple of decades of his life. Colds and infections seemed to find him without fail – some just annoying, some very serious. Finally, when he was in college, he got a diagnosis. And today, he's leading a local effort to battle the bewildering array of what are known as primary immunodeficiency diseases. He's chairing the leadership team for a walk to be held in Philadelphia on Sept. 28.

“I was born with a primary immune disease called Common Variable Immune Deficiency,” Lage writes on his sponsor page for the walk. “I was sick with ear and throat infections throughout my school years. While in college, I had pneumonia twice, and one staph infection. When we started looking for a cause of the infections, I was diagnosed with CVID. I was lucky; many patients afflicted with primary immune diseases are not diagnosed until well into adulthood.”

The main problem in diagnosing immune diseases is their range of severity and symptoms. It's estimated that about 250,000 people in the United States have one of the 185 diseases that fall under the umbrella of primary immune diseases. Many more go undiagnosed. It's more than just catching a cold every winter – it can be as severe as not going outside because any contact with germs can trigger a life-threatening infection.

“For more than 25 years, I have received treatments in the form of IgG, which is a blood plasma product collected from donors across the country,” Lage writes. “The replacement therapy brings my immunoglobulin levels into the normal range and helps me fight off infections.”

Today, Lage leads a full life with a wife and two grown sons, and he can play sports and travel internationally, although he has to be careful.

Lage is a member of the board of trustees for the Immune Deficiency Foundation (IDF), which unites national efforts to find a cause and treatments for the range of diseases. “The IDF has been an invaluable resource for me over the last 30 years by providing information, drug shortage alerts, and with advocacy for fair laws and insurance practices,” Lage writes. “The IDF was founded by Marcia Boyle in 1980 bcause her son was diagnosed with an immune deficiency and she could not find information to assist her family. Today, the IDF is improving the diagnosis, treatment and quality of life for persons with primary immunodeficiency diseases through advocacy, education and research.”

Last fall, the IDF benefit walk in Philadelhia raised more than $75,000 and brought together more than 500 walkers, both individuals and teams who walked in honor of someone. The goal for this year's walk is to double both those numbers.

Lage has already exceeded his monetary goal, having raised almost $1,500. But the walk still needs supporters to step up. The Philadelphia walk is part of a nationwide chain of walks to support the IDF, including Boston on Oct. 5, Los Angeles on Oct. 19, Chicago on Oct. 26, New York City on Oct. 26, and Houston on Nov. 9.

The Second Annual IDF Walk for Primary Immunodeficiency is held along the Delaware River Waterfront at Penn's Landing. It starts and ends in front of the Independence Seaport Museum at Walnut Plaza. Registration begins at 8:30 a.m., there's an opening ceremony at 9:45 a.m., and the walk begins at 10 a.m. Details are available at www.walkforPI.org, or call 800-296-4433.

To contact Staff Writer John Chambless, e-mail jchambless@chestercounty.com.

 

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