
The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
As a work-life specialist for the U.S. Department of Defense, Kelli Williams connects medically disqualified Air Force trainees with resources, education, and employment.
“Many members I see are afraid, disappointed, and filled with uncertainty. I’m able to help them bounce back and regain hope, courage, purpose, and direction,” said Williams.
“I help them find opportunities so they can keep moving forward and continue to strive to make an impact in the world as a civilian. I help them understand that having a medical condition doesn't mean that they can't continue to make a positive impact within themselves and within their community. It's very rewarding.”
Williams, 54, empathizes with her clients because she navigates life with a chronic health condition—common variable immune deficiency (CVID). CVID has affected both her physical and emotional health.
“It’s really tough always being sick. And when I'm not sick I feel isolated because I’m afraid I might get sick if I’m around too many people. You don’t have a lot of friends, and you may lose friends,” explained Williams.
“People don’t understand and some have made hurtful and depressing comments to me. CVID can be quite a depressing disease to have.”
Williams learned she had CVID after the birth of her third child. Struggling with pneumonia and sepsis during her pregnancy, Williams delivered her daughter early and stayed in the intensive care unit for four days. Concerned about the outcome of her pregnancy and health history, doctors ran tests that provided Williams with a diagnosis—and an answer to the reason why she had spent a lifetime with illness.
“It was scary, but it was also kind of a relief because I thought ‘OK, now there is something I can pin to this,’” said Williams.
The diagnosis explained the complex infections she had as a child. She lived with frequent ear and upper respiratory infections and fatigue. She had strep throat at least 15 times and pneumonia six times within three years.
“I was always sick, wondering what was going on with me. My doctors just kind of brushed it off growing up the whole time. They just told me I had to stay in the house, keep vitamins in my system, but nothing seemed to work,” said Williams.
“I was in and out of the emergency room so often that it got to the point where my mother would say, ‘You like being sick.’ Who likes being sick? Hearing that as a child definitely hurt my feelings and seeing my parents’ frustration only made me feel worse.”
Being ill affected her marriage and her relationship with her children. With her husband in the Navy and gone for months at a time, Williams cared for her two sons and her daughter by herself.
“As a child, my son didn’t understand. He would say, ‘Oh, you are always in bed. You never want to do anything.’ And it’s not like I didn’t want to, it was just that I didn’t have the energy and I wasn’t well. So, it took a toll on him, but now he understands,” said Williams, whose children are now grown.
Williams decided that being sick would not prevent her from pursuing a post-secondary education. She earned an associate’s degree in health administration, a bachelor’s degree in psychology, and a master’s degree in marriage and family counseling. She is also a Master Resilience Trainer, who provides resiliency skills training to Air Force personnel, teaching them ways to cope with adversity and stress and improve mental health and performance.
“I love to help people see their value and help make them feel better about their next journey, and be an advocate for them as I gather necessary resources to help promote a smooth transition,” said Williams.
After her diagnosis, Williams learned more about CVID by reading materials from the Immune Deficiency Foundation (IDF), and she shared her knowledge with clinicians. She also joined the IDF social media pages, Get Connected Groups, and Walks for PI.
“I’m so thankful for all of the resources IDF has provided for me because that has made my life so much better,” said Williams. “Educating yourself is so important. When I was first diagnosed, I did my research and said, ‘Well, the worst-case scenario is I might have to get infusions for the rest of my life.’ It ended up being that way, but I wasn’t afraid because I did my research.”
Because of primary immunodeficiency (PI), Williams has learned to push through adversity and become more resilient.
“It’s definitely made me a stronger person and having this disease humbles me. I have a great appreciation for life and for those that help others,” said Williams. “Every time I do my infusion, I am so thankful for donors who take the time out of their day to help me because if it weren’t for them, I probably wouldn’t be here.”
Williams encourages others with PI to connect with friends, family, and fellow zebras—and provide a listening ear for others who may need it. Those relationships provide community and make the PI journey a more manageable experience.
“Make sure that you have an emotional and social support system because it can be lonely, and you can feel overwhelmed. Having someone to be there to listen is comforting,” said Williams.
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