The story of Sandy
Hi From childhood on, I have been prone to chronic viruses and infections. It takes my body longer to respond to medicine and recover. My pCP would say there’s something wrong with my immune system, but they didn’t know what. Finally, in my 40’s, my new PCP recommended an allergist immunologist. Dr. Klein tested for and diagnosed my Primary Immunodeficiency, Common Variable Immunodeficiency. We finally started me on subcutaneous infusion of plasma IGG. I’m still prone to viruses and infections, but the plasma infusions every 2 weeks help me to fight them, along with antibiotics when needed. Dr. Klein retired, and Dr. Prematta of Delaware Valley Allergy now oversees my CVID. Being sick often, taking longer to recover, and having to infuse plasma protein therapy with IGG,s is difficult. My Faith in God really helps through difficult days. I have a good connect group (of others with Primary immunodeficiency through the Immune Deficiency Foundation) that meets monthly via zoom. A lot of people don’t understand rare diseases, as many times we look fine. I’m thankful to have some friends and family that understand. We call ourselves Zebras, because doctor’s have been taught if it has hooves and sounds like a horse, diagnose it as a horse. Zebras have hooves and sound like horses, but they’re not horses. I encourage Doctors and Scientists to think outside of the box when testing, diagnosing. Patients, look for doctors who listen to you and are willing to think outside the box. Let’s strive to thrive to live our lives with rare diseases. We can change our disease, but we can strive to find the good things in each day, and no matter whether it’s a good day, health wise, or difficult day, let’s find something to smile about