Northview graduate speaks out for awareness of rare ailment

Diagnosis explained frequent sickness

5/2/2012
BY CARL RYAN
BLADE STAFF WRITER
Megan Bringe prepares an infusion of the plasma that replaces the antibodies her system can't produce.
Megan Bringe prepares an infusion of the plasma that replaces the antibodies her system can't produce.

Northview High School graduate Megan Bringe had a busy April, which was Primary Immunodeficiency Disease Awareness Month.

The Sylvania Township resident, who is a student at Ohio University, made public appearances in OU's hometown, Athens, had interviews with newspapers there, and spoke with doctors and the public, all with the goal of increasing recognition of PIDD.

The 22-year-old learned last year that she has the disease. The diagnosis was a revelation.

"My entire life I suffered from chronic sickness," she explained.

"There were ear infections, sore throats, digestive issues, fevers, thrush, fatigue, and a lot more. My doctors just kept saying I would just grow out of it. I was that kid who always caught the latest cold or flu going around."

Miss Bringe said she's doing a lot better know.

With the diagnosis came a treatment that allows her to live a pretty normal life. Every five days she gives herself a plasma infusion that replaces her antibodies, which are supposed to be made by the body's immune system.

She has been able to return to college, after being forced to withdraw in the fall of 2009 when she came down with a near-fatal case of H1N1, more commonly known as swine flu, and required full-time care for 18 months.

"I was that kid that got sick at summer camp, school trips, and family vacations," she explained. "It was so frustrating to be sick all the time." Her family knew something was wrong, and never stopped looking for answers, she said.

Now she feels reasonably well, but suffers from some side effects of the disease, including fibromyalgia, characterized by pain and tenderness in the joints and soft tissue.

She said an immunologist diagnosed her disease with a simple blood test. Up to then, her doctors had treated each of her illnesses individually and never thought to link them to a defect in her immune system.

The immunologist expressed surprise that she had survived the swine flu and said her case of PIDD was congenital.

Chronic colds, flu, and fevers can be a sign of the immune-deficiency disorder, she said, as can four or more ear infections in a year, two or more serious sinus infections in the same amount of time, and taking antibiotics for two months ore more with little or no effect.

Some of the doctors she spoke with in Athens knew about the disease, but they told her they had been taught in medical school that the disease was so rare they probably would never see it.

Miss Bringe said she receives a delivery of plasma each month from Grand Rapids, Mich.

Each vial costs $1,000, and the price of a year's worth is $100,000, which her parents' medical insurance covers.

Still, cost is a concern because she'll require the treatments for the rest of her life.

"I'm very lucky. There are a lot of programs, so when I'm off my parents' insurance I'm hopeful I won't be stuck."