Eileen lived with frequent infections, illnesses, and exhaustion before being diagnosed with CVID at the age of 57. We're excited to share Eileen's journey as our next Patient Spotlight.
Please write a few sentences on your overall story living with Primary Immunodeficiency.
The reality is that I have been living with a Primary Immunodeficiency my entire life, but only learned the science and name of it when I was diagnosed. Living with this before diagnosis meant a life of learning the hard way to be vigilant about potential contagions, and having to create my own personal rules about hand-washing and germ-tracking from an early age, and being careful about what I ate (especially raw food, as I had been sick from it so many times when others seemed to be fine). I knew, long before I was diagnosed, that I did not have what might be called a “strong constitution.” I seemed to get everything that was going around, and I would get it worse than anyone else, and it would last far longer, at times leading to complications (simple colds landing in my chest or sinuses, requiring multiple courses of antibiotics). I was often tired, and needed to nap or go to sleep when others were living their lives in full swing. Crowds left me sick. Uncooked food, including sushi and salads, had left me with severe food poisoning. And everyday simple things like hypoallergenic cosmetics left me with painful staph infections in lymph nodes.
How and when were you diagnosed? Which specific Primary Immunodeficiency disease do you have?
I was diagnosed with CVID (at UCLA) in 2023 at the age of 57, after a finding of hypogammaglobulinemia on a rheumatology panel for hypermobility was dismissed by a very well known rheumatologist. My primary physician saw the degree of my low Immunoglobulin, as well as all 4 IgG subsets, and sent me to a UCLA immunologist to be evaluated for immune deficiency. My primary had known me for 25 years, and as often noted that I “get the weirdest infections.” So after a lifetime of common colds and flus that lingered far too long and left me exhausted, odd and unusual infections, and a rare, aggressive reproductive cancer at 31 (9 months after my only child was born) I began the journey of discovering what it meant to have an ‘Inborn Error of Immunity’ with my diagnosis.
How has Primary Immunodeficiency treatment impacted your life? How did you decide this was the correct treatment for you?
I began sub-cutaneous infusions in January 2024. I made the decision to begin infusions after learning my specific deficiency left me vulnerable not only to infections, but also to measles, and I live in a city that has had multiple measles outbreaks. It was not an easy path for me. I failed off the first two brands I tried due to allergic reactions to binders and/or stabilizers, but I stayed with it and found the brand that works for me. Additionally, I infuse in an unusual way- as a manual push- being sensitive means titrating all treatments and medications, which I had learned decades ago. So I infuse 1 gram at a time, quietly and peacefully as part of a regular gratitude meditation practice.
Do you share your story with others online? If so, tell us what made you decide to do so.
I participate in support groups offered by the Immune Deficiency Foundation (IDF), and have shared my story with group members, but I have not shared my story online in any other way as I do not have a social media presence.
If there's anything else you'd like to share with us, please do so below.
During my journey to diagnosis, and in the years that followed, I learned that a significant number of people with Primary Immunodeficiency seem to have neurodivergence and/or connective tissues disorders. I have also learned how differently immune deficiency seems to present in each individual. The science seems to only now be catching up with lived experience. I’m grateful to be alive in a moment where I can see real progress in real time. It takes a village to live with an immune system that is suboptimal. Especially in a post-pandemic period. I continue to learn every day about the stamina and fortitude necessary to navigate a bustling, crowded urban city while maintaining my quality of life, and health. Being open to redefining what healthy aging means to me has been the most significant part of my journey since my diagnosis.