Seattle runner diagnosed with rare immune disease says 90% of patients don’t know they have it

For nearly 15 years, Lillie Hunnicut was told she was fine. She wasn’t.

The Seattle woman, once a half-marathon runner, watched her health unravel through her 20s until she could barely walk a block and was sleeping 18 hours a day. Doctors repeatedly chalked it up to stress. The real answer was a rare immune disorder called common variable immunodeficiency, or CVID, that had been hiding in her bloodwork for at least a decade.

“It was almost 15 years between when my symptoms started and when I was diagnosed,” Hunnicut said.

Her symptoms began in high school with stomach issues and unusual fatigue. By college, she was on antibiotics nearly every month. Allergy tests and elimination diets turned up nothing. In her late 20s, her decline accelerated sharply.

“At first they were more subtle — just kind of minor stomach issues and feeling a little off, or more tired,” she said. “Then I started to notice I was getting sick a lot more easily than my peers. It kind of turned into long-lasting infections, things that were more severe.”

The breakthrough came after Hunnicut moved to Seattle and found a primary care doctor willing to dig deeper. A routine test flagged a low immunoglobulin A level — the same abnormal result that had appeared in her labs roughly 10 years earlier and gone unaddressed. This time, her doctor referred her to immunology.

CVID is a primary immune disease in which the body fails to produce functional antibodies, leaving patients vulnerable to repeated and severe infections along with fatigue, digestive problems, and other systemic effects. It is estimated to affect roughly one in 25,000 to one in 50,000 people, though specialists believe the true number is much higher.

“Between 70 and 90% of people with an immune disease like mine don’t know that they have it,” Hunnicut said. “I was absolutely flabbergasted when I learned that as well.”

For Hunnicut, the diagnosis itself was a relief

“When you know that you’re sick and are being told that things are fine, hearing that was incredibly validating,” she said. “I felt very hopeful.”

Treatment is immunoglobulin replacement therapy, made from human plasma donors, and Hunnicut will need it for the rest of her life. That reality has turned her into an advocate for plasma donation, which she said almost no one in her life had done before her diagnosis.

“The life that I have now is one that I didn’t expect to get back,” she said. “I really feel like I’ve been given a second chance. That is only possible because people choose to donate plasma.”

Now recovering from hip surgery, Hunnicut said she has returned to hiking and climbing and plans to run again soon. Her message to others who feel unheard by their doctors is simple.

“Trust your gut. You know yourself, you know your body, and you know when things are wrong,” she said. “Staying persistent and believing what your body is telling you” matters.

More information on primary immune diseases is available through the Immune Deficiency Foundation. Plasma donation information can be found here.

Manda Factor is the host of “Seattle’s Morning News” on KIRO Newsradio. Follow Manda on X and email her here. 

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