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Bringing awareness to a rare condition
Whenever 56-year-old Debra Griffin gets ready to leave her Fort Scott home, she makes sure she has an extra supply of blue surgical masks in her purse -- in addition to the one she is wearing -- rubber gloves and hand sanitizer or wipes.
Griffin doesn't enjoy wearing the mask because it makes her feel somewhat claustrophobic. But it also provides comfort to the Tennessee native whenever she is around other people. It makes her feel safe even, especially during flu season.
You see, Griffin isn't wearing the mask for everyone else's sake. She's wearing it for her own.
"I'd rather be the safe side after 21 infections last year," she said. "I'm working on zero infections this year."
Griffin's susceptibility to illnesses is because of her immune system's inability to ward off infection. After suffering from numerous colds throughout her lifetime and having to undergo 18 surgeries, Griffin was diagnosed in 2010 with Common Variable Immune Deficiency, a rare genetic disease.
Years of poking and prodding and having her medical history on display finally led to knowing the answer to her illness riddle.
"My mission in life now is to just make sure other people can be spared what I have had to go through," she said.
April is Primary Immunodeficiency Month, which is meant to promote awareness to primary Immunodeficiency disorders (PIDD), such as CVID.
PIDD is a group of genetic diseases in which the immune system's ability to fight off infection is greatly reduced or absent. These problems lead to an increased susceptibility to infection. There are more than 150 different types of PIDD and some 250,000 people diagnosed with them in the United States.
About one in 25,000 to 50,000 people suffer from CVID like Griffin, according to a report published on the Journal of the American Society of Hematology website.
Growing up a sick kid
Griffin has had her share of childhood illnesses.
Born with the disease, at a young age Griffin suffered from more ear and throat infections than the average toddler.
Of the 18 surgeries she's had, four of them were before her 10th birthday.
Dr. Selina Gierer, an allergist and immunologist at the University of Kansas Medical Center, said PIDD tends to go undiagnosed.
"Any patient, when I speak with them, they say they've been sick their whole lives," Gierer said.
Gierer said that if a patient has two or three minor colds or sinus infections per year that person wouldn't typically be screened for an immune deficiency disease.
But if they are getting eight or nine infections a year, they should probably be tested.
"The problem is eight colds is common for kids," Gierer said.
Getting diagnosed
After childhood, Griffin's sicknesses did not let up.
She saw specialist after specialist and was diagnosed with everything from chronic fatigue to fibromyalgia. With such an extensive medical history, Griffin said it got to the point where she couldn't even find a primary care physician to see her.
"The doctors said well I'm not sure I want to take you on as a patient because you have too many autoimmune diseases and I don't want to get into that," she said.
"They kept sending me to all of these specialists," Griffin said. "This is why my heart is so set on trying to get the news and awareness out there because the earlier you catch the disease and start on treatments, the (fewer) autoimmune diseases you have."
At age 54, Griffin finally got an explanation for her medical history when she was diagnosed with CVID.
She said it is frustrating that saw the "best of the best" in the medical field and continued to go without answers.
"You could be bitter," Griffin said. "And a lot of people wouldn't see any blessings at all, but I firmly believe in every adversity there is a blessing."
And Griffin's diagnostic blessing can be attributed to her doctor's favorite medical show, "House," the Fox TV drama which centers on one patient, usually suffering from a rare or uncommon illness.
Griffin said her immunologist "admitted" she diagnosed her only after watching an episode of the show in which a patient suffered from ailments similar to Griffin's.
"She connected all the pieces to the show and she admitted that to us," she said. "My husband and I were walking to the car after the appointment and he said if that doctor had not watched that episode," he didn't think Debra would have been diagnosed. "And it just hit us like a brick wall -- the seriousness of the disease."
Awareness and living with CVID
Griffin said there has been a lot of progress made in informing the public about PIDD, but not enough.
"They speculate only 20 percent of people have been diagnosed with one of the 160 or more diseases and more than 80 percent of the population is walking around with this fearful disease," Griffin said.
Griffin currently sees seven different specialists and receives weekly treatments to replace her immunoglobulin levels. She visits online support groups and social media sites to share information and deal with the emotional aspects of the ailment.
"As a patient, it's overwhelming," Griffin said. "If my grandchildren are sick, I can't be around them. And one of the first things I noticed in those support groups was how many men walk out on their wives who have an incurable disease."
She said living with CVID could have been trying on her marriage to Joe, her husband of 38 years, but the couple wouldn't let it.
"He's gotten very frustrated with the disease," Griffin said of Joe, who is the minister at Margrave Church of Christ. "But to have a husband that finds that I'm still appealing to him as a partner, it's another blessing. He's the last thing I've seen through every surgery and it was his face that I saw when I woke up."
Financially, there were years the couple was paying more than $100,000 for treatments and medical bills.
Griffin said the couple opts to take life one day at a time, while she continues to try and see the positive throughout the journey.
"Most people pay off a house in a lifetime, but my body is our shelter," she joked. "We have a lot of medical bills and you do without. Yeah, we're not taking trips and we don't have the biggest house or nicest furniture, but that's OK. We have each other, we've got our children and our grandchildren."
For more information about CVID or PIDD, contact the Immune Deficiency Foundation at (800) 296-4433, or visit www.primaryimmune.org.