09/25/2013 03:09PM, Published by ACL, Categories: In Print
By Richard L. Gaw
Landenberg resident Chuck Lage (pronounced La-hay) is the director of business planning for the Project Management Institute in Newtown Square, a professional association representing project managers, with 440,000 members around the world.
At 55, Lage is a successful businessman, a husband to his wife Maggie, and the father of two boys. He is healthy-looking and active, and there are no visible signs that once a week, Lage administers himself a treatment of immune globulia subcutaneous, a colorless fluid designed to hold back the effects of immune deficiency. Through the use of a cloth pack attached to his waist, the treatment process is not a hindrance to his busy and full life, merely an accompaniment.
His story began five decades ago, when he was a youngster growing up in Oak Park, Ill.
By the time Lage had reached the fifth grade, every little illness he had was making him excessively sick, and he was averaging only three days of school attendance a week. His father, a physician, was giving him injections of antibiotics at home, but Lage was still susceptible to illnesses of all kinds. Much of his youth was spent shuffling from doctor to doctor, from examination to examination, with no real diagnosis.
Although being an athlete in high school made Lage stronger, his health was short lived. During college, he suffered pneumonia twice, and come down with a staph infection. He was admitted to Rush Presbyterian Hospital in Chicago when he was 22, and was given a series of tests to determine what was wrong. Finally, after more than two decades of guessing, a simple blood test revealed that Lage was suffering from primary immunodeficiency, or PI.
His treatment began with a low dose of antibiotic every day, and although Lage has managed to keep his disease under control through careful monitoring and medication, he is aware that for every person who is able to keep their immune deficiency in check, there are many others who are not.
On Sept. 29, Lage will be leading hundreds of participants in Philadelphia's inaugural The Immune Deficiency Foundation (IDF)'s Walk for Primary Immunodeficiency, a 1.2-mile walk intended to raise awareness of the disease.
"IDF, and most particularly this walk, is about awareness and early diagnosis, and to tell people that there are answers, and that there is a community out there," said Lage, who serves on the IDF's board of directors. "We don't look sick. We look normal, and lead relatively normal lives. We just struggle with illness and energy and having to put more time to our health than most people. This walk is to tell people a little bit more about us."
Founded in 1980, the IDF is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. The foundation helps people overcome difficulties and live healthy and productive lives. The constant presence of IDF assures patients, their families and their medical caretakers that there is a place to turn for help.
"Other people think with PI are all hypochondriacs, that they're complaining all the time, that it must be faked, but the truth is, we know when something's not right," Lage said. "Growing up, I knew I was sicker than most, but I didn't know what my underlying condition was."
Using a zebra motif -- the symbol of the IDF -- Lage said too many times, doctors would treat the infection or illness itself, but not treat the cause of the infections. "If it acts like a sinus infection, it's a sinus infection, but sometimes, it's a condition that causes the sinus infection. It may be a horse of another stripe," Lage said.
PI affects children and adults who are born with an immune system that's either absent or severely compromised, which leads to a greater risk of infections. In most cases, there's a pattern of chronic infections before primary immunodeficiency is suspected. There are more than 185 types of PI -- some are relatively common and others are quite rare -- and while there are approximately 250,000 people diagnosed with PI in the United States, thousands more go undetected. They experience difficulties financing their healthcare, finding educational materials on the disease, and locating others with whom to share their experiences.
"With every one of these events, its an opportunity to get the word out," said John Boyle, director of development for the IDF. "We are fortunate to be a national organization, so our voluntees are spread throughout the country. In addition, we have a lot of close friends and supporters the Philadelphia area, such as the Childrens' Hospital of Philadelphia."
Boyle said that although the IDF receives strong funding from members, pharmaceutical companies and the plasma product companies that develop the medication that those with PI take, walks such as the upcoming one in Philadelphia serve as the foundation's grassroots awareness campaign. Similar walks are slated in Los Angeles and Chicago this year, with plans to expand to New York, Boston and Houston next year.
"Our patients are grateful to be diagnosed, to have an answer to a very long question, 'What is going wrong with my health?'" Boyle said. "What they learn as to what lies ahead is very powerful. We have patients throughout the country consistently asking, 'What more can I do?'"
Locally, Lage is not the only area resident with a front-and-center visibility with IDF. Wilmington resident Judy Kozulak, Terry Halper of Philadelphia and April Sica of Newtown Square have also been key players to raise local awareness of PI.
"Not only is the walk going to be about awareness and a fundraiser, it encourages people to go out in the community and not be afraid of going out," Lage said. "That's difficult for some people, to ask friends and family and colleagues for support. I've been humbled by the support I've received. This gives people a platform to maybe improve someone else's life."
Walk for Primary Immunodeficiency
A benefit the Immune Deficiency Foundation (IDF)
Sunday, September 29, 2013
Penn's Landing, Philadelphia
Registration begins at 9 a.m.
Opening ceremonies at 9:30 a.m.
Walk begins at 10 a.m.
Full details and registration information are available at: www.walkforPI.org, or by calling the Immune Deficiency Foundation at 800-296-4433.