Living a life with common variable immune deficiency

Meet Anne, a devoted teacher and professor of Education at Whitworth University, who has been fighting common variable immune deficiency since 1994.

Anne struggled with her health, in addition to her fatigue, throughout her childhood and young adult life not knowing she had common variable immune deficiency (CVID), a form of primary immunodeficiency (PI). It was not until she had the privilege to meet the late Gail Shapiro, MD from Northwest Asthma and Allergy Center in Seattle, WA, that she was properly diagnosed. To combat the continuous infections Anne was experiencing, Dr. Shapiro prescribed intramuscular immunoglobulin (IMIG) injections to support her complications. When this treatment proved insufficient, Anne consulted with Hans Ochs, MD, an immunologist at Seattle Children’s Hospital. With the help and care from Dr. Ochs, Anne was administered a one-year trial of intravenous immunoglobulin replacement therapy (IVIG) to help replace the antibodies that Anne was missing. Even though the trial was beneficial and allowed her to work full-time in both public and private schools, the insurance company denied the continuation of infusions because she was considered not “sick enough” to continue the IVIG protocol. 

Lack of access to these infusions proved to be detrimental to Anne’s life and health. For almost two decades, she constantly struggled with numerous infections and dental needs due to her compromised immune system. Finally, in 2013, Anne was hospitalized with double pneumonia. She was in the hospital for a total of six days, and it took over a year for her to fully recover. Due to this extreme incident, Anne was re-diagnosed with CVID and was able to achieve insurance coverage for her IVIG. Anne continued to receive these infusions until she was referred to Kerry Drain, MD, from Spokane Asthma and Allergy Clinic. After meeting with Dr. Drain and having her responses consistently monitored, Dr. Drain suggested a more frequent subcutaneous immunoglobulin replacement (SCIG) therapy. This treatment has given Anne the opportunity to live almost infection free over the past four years.

Anne has gone through a lot of struggle and discouraging times living with CVID. She had to miss time with family, friends, and her community, but she wants to make it known that anyone living with CVID should be living their life with gratitude.

“Each week as I take time to do my subcutaneous Ig infusion, I make it a sacred time of gratitude. Generous plasma donors are sharing with me their successful triumph over disease that my body can’t perform. How gracious of them to donate so that I can live a full life,” explains Anne.

Anne is extremely grateful for Dr. Shapiro and Dr. Ochs. They were an instrumental part in referring her to the Immune Deficiency Foundation (IDF) community where she was able to receive the support she needed. Anne cannot thank the IDF community enough for helping her understand her condition, advocating for her treatments during her times of need, guiding her as she fought for coverage of her treatment, and helping with support during dark days of her chronic condition.

Anne says, “I live a meaningful life because so many others have cared enough to donate, research, and support those of us with this condition.”

Inspired by Anne? Make a difference on others by sharing your story. If you would like to share your journey with the PI community, please contact us at info@primaryimmune.org.