Susan finds "priceless" support system in the Immune Deficiency Foundation

Susan grew up in a rural area and was always active but often caught strep throat. In her college years, she had bronchitis and pneumonia, but it was chalked up to burning the candle at both ends due to a busy schedule of work and school. After searching for answers from various doctors and misdiagnoses, she was diagnosed with Sjogren's. According to Susan she "knew there was more" and continued to search for answers.

When speaking with a friend, she learned that her friend's sister had a similar story, and the conversation led to the suggestion to see an immunologist, which changed Susan's world. She says, "it's been up and down, with more diagnoses tacked on to my PI, but I am now at a good point."

In an effort to find more information, Susan came across the Immune Deficiency Foundation through a Google search. From there, she "requested that the fabulous handbook be sent to me, as there are many types of PI and not much information at doctors' offices." Next, Susan became more involved with the foundation through various means like speaking with congressional leaders, meeting plasma donors to put a face to PI, or working with her neighbors to plan a Walk for PI: Coast to Coast event in her area. She found that "the more I involved myself, the more I received.  There is a great sense of community, and I make a difference."

Furthermore, Susan discovered an invaluable support system. "I found those who have struggled the same and understand. What I love about the Immune Deficiency Foundation is that, like PI, it is rare and forever. Rare since it's multi-focused, not just for research but continual support. It is a community committed to improving our quality of life. They are there before diagnosis, during and well after. I no longer feel powerless, misinformed or isolated- this is priceless to me."