Howard mother, son advocate for those with immune disorders

Every three weeks, a nurse arrives at the Columbia home of John Boyle, 35, for his infusion of intravenous immunoglobulin, or IVIG.

"My son [John Stephen Boyle, 3] and I sit on the couch and watch a Disney movie." Boyle said. "I'm hooked up to an IV pole and a pump, and my nurse is monitoring me."

It's an inconvenience, but one that is well worth the hassle for Boyle. The infusion delivers the antibodies his body lacks, helping him fight potentially deadly infections.

Boyle now works as a fundraiser for the Immune Deficiency Foundation, a national advocacy and support organization founded by his mother, Marcia Boyle, who lives in Ellicott City. The organization holds a national conference at a different location each year, and the 2013 conference will take place in Baltimore June 27-29.  It is expected to attract more than 1,000 participants from all over the country and world.

Marcia Boyle recalled the harrowing early weeks of her son's life, after he was born in November 1977 at Howard County General Hospital. Though he seemed healthy at first, "at the age of six months he started to have a bad cough and was failing," said Boyle. "I took him to the pediatrician several times. He got worse very dramatically and very quickly."

John Boyle spent six weeks in the pediatric intensive care unit at Johns Hopkins Hospital, said Marcia Boyle. Tests revealed he had been born with a primary immune disorder called X-linked agammaglobulinaemia, which basically means "his body doesn't produce enough antibodies," Marcia Boyle explained. That was actually good news, since the other possibility was severe combined immune deficiency, like that experienced by the so-called Boy in the Bubble, David Vetter, who was in the news at the time.

Soon after her son was diagnosed, Marcia Boyle, a librarian by training, began researching primary immune deficiency disorders (PIDD). She found a few articles, including some that were out of date. More was needed, so she decided to create a national organization, which was incorporated in December 1980, for people with PIDD and their families.

"The goal was never a local support group," she said, but rather a national organization that would provide education and advocacy for people who had previously been scattered and powerless.

"Nobody was advocating for them," said Marcia Boyle. "I couldn't just sit back and say, 'Someone else is taking care of all that.' From the beginning, advocacy has been extremely important to what we do."

One recent victory was the Medicare IVIG Access Act, which was signed into law early this year and gives Medicare Part B coverage for in-home infusions, she said.

"When my son was diagnosed with a primary immunodeficiency disease in 1978, no organization existed and no materials were available for patients and families. Today, because many others have shared a common vision, we have been able to accomplish a great deal," she says on the foundation's website.

PIDD is an umbrella term that applies to at least 185 separate diseases, some more common than others, but all comprising a person's ability to fight infection. And it may be more prevalent than people know. John Boyle said he sometimes urges friends who seem to come down with one illness after another to find out if they have a PIDD. More than once, the answer has been yes. "Our patients find very regularly after they are diagnosed they know somebody else" with PIDD, said John Boyle.

The organization's "Think Zebra" campaign is a riff on the popular advice to doctors that they should "think horses" when they hear hooves. In other words, doctors are trained to follow symptoms to the most logical conclusion, which means they may miss the "zebra" that is PIDD.

For its first few years, the Immune Deficiency Foundation was headquartered at Marcia Boyle's kitchen counter. Then it moved to small offices in Columbia. Since 1992, it has been in Towson. Marcia Boyle was volunteer president and chairman of the board until 1992, and returned as president in 2005.

IDF now has 25 employees and a mailing list of more than 20,000, said Marcia Boyle. Its medical board includes advisors from all over the country, and it publishes a wealth of educational materials, including books for healthcare providers, a handbook for patients and families, and a children's book, "Our Immune System." It even publishes a comic book that compares a body's immune system to a rock band.

"My day to day, you would never know I had this issue, and that's the same with most of our community," John Boyle said. "But that's because he was diagnosed.

"We encourage patients to act as their own advocates," he said, and urge their doctors to test for PIDD. "If we can spread awareness, we can help people who are struggling with these chronic infections."

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