CVID patient shares struggle with immune disorder

Updated: Oct. 26, 2016 at 5:22 PM CDT
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HUNTSVILLE, AL (WAFF) - Autoimmune illnesses can be very perplexing not only to patients but to doctors because many times they are so hard to diagnose. One Huntsville woman shares her journey.

Common variable immune deficiency (CVID) is a disorder that impairs the immune system. Patients like Jennifer Cullars are highly susceptible to infection from bacteria, viruses and more.

Patients develop recurrent infections, particularly in the lungs, sinuses and ears. Add a Lupus diagnosis and you really have problems.

"They said I had ankylosing spondylitis in my back and still did not think to check for lupus or anything else," Cullars said.

Cullars then saw a doctor in Birmingham. After some lab work, he called and said her "A and A levels were through the roof." She said the onset was sudden

"I couldn't hold things. I couldn't walk. They thought MS more than anything," she said.

Cullars keeps a tale tell butterfly rash on her nose now but covers it with makeup. She also has fibromyalgia.

She said she has constant fatigue and tunnel vision to the point of almost going blind. She's on disability now after being a full-time working mom for years.

Cullars got a CVID diagnosis a couple of years after the lupus diagnosis.

"My scalp would break out. My joints would swell. I wouldn't be able to walk. I would sleep sometimes for days," she said. "They would tell my mom, 'Just give her more vitamins.'"

Cullars also said she got an under-the-skin itch whenever she would go in the sun.

Researchers at UAB did a full genetic workup and identified the chromosome that was the problem.

Treatments include plasma products. Cullars said these cost her $100 per treatment per week.

"Doctors told me I'd never live to see 40. I'm 46. I'll be 47 in January," Cullars said.

She said she takes it all day by day.

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