By Molly Daly
PHILADELPHIA (CBS) – The Immune Deficiency Foundation is holding a walk on Penns Landing Sunday morning to improve the diagnosis, treatment and quality of life of people with primary immune deficiency diseases.
People with Primary immunodeficiencies are born with absent or compromised immune systems, making them susceptible to infections.
“Either in the blood, in your sinuses or respiratory system, or even in intestines,” Chester County activist Chuck Lage said.
Lage says people with a common form of the disease often have frequent ear or sinus infections, and can go for years before they’re diagnosed. In most cases, primary immunodeficiency can be treated with immunoglobulin therapy.
“I’ve been corresponding the last couple of months with a grandfather from Rhode Island who was just diagnosed, who has begun the IV treatments, and is beginning to feel better. He’s lived his whole life with it without knowing it,” Lage said.
Lage says the biggest challenge is making the public and the medical community aware of the disease, which is different from autoimmune or acquired immune diseases.
Perhaps the biggest surprise, says Lage, is that people with primary immunodeficiency don’t look sick:
“We look normal, and healthy, and can lead productive lives. We have an underlying condition — that can mean you can miss work a little more often, you might be a little bit more concerned with germs and infections from your coworkers. They may not recognize you may need some extra sleep, and may not be able to work the same hours all the time, because you look normal.”