“But You Look Healthy,” Doctors Tell 19-Year-Old CVID Patient With Multiple, Life-Long Infections
April 14, 2013
As a 19-year-old third-year nursing student, you can tell right away that Stephanie Larder doesn’t live in a plastic bubble–but years ago, her diagnosis of Combined Variable immunodeficiency Disease might have meant a lifetime of seclusion.
Today, Stephanie can treat her disease with transfusions of immunoglobulins delivered intravenously each month. Though her life is closer to normal now, as a child she battled multiple illnesses without a diagnosis.
“For years, I have struggled with illness after illness, my whole childhood and teenage years have been doctors visits and constant misdiagnosis,” she says. “I was always getting told from the doctors, ‘Oh, you look so healthy! It’s probably just this or that,’ and they would constantly send me away with no further investigation.”
She may have looked normal, but she felt anything but. Each morning she woke up fatigued and struggled with non-stop ear infections, sinus problems, skin infections, GI issues, chest infections, bronchitis–even pneumonia.
“I had recurrent UTI’s, chronic joint pain and I was anemic.”
Despite all of that, Stephanie only found herself diagnosed two months ago by an immunologist.
CVID, he explained, is when your body cannot produce a sufficient amount of immunoglobulins.
“In my case, mine were at a critical level.”
These immunoglobulins protect you from viruses and infections.
“Since mine are so naturally low, it means that every month I’ll have an IV of specially formulated plasma product from anywhere between two to six hours at a time. The side effects of this treatment are horrible. But I’m only one treatment down, and I hope my body adjusts over time.”
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