A Lifetime of Illness Before a PIDD Diagnosis

By Suzanne, United States, January 29, 2014

I'm now 66 years old, which I'm told is somewhat of a minor miracle considering what I have. Born in 1947 as a 4 lb. premie, I was sent home to die. Nobody told me that, so I continued to live a life of constant illness and antibiotics. This was what was "normal" for me, and since I'd never known anything else I continued to live, go to school and church, and was best friends with my family doctor. For some reason, the teen years seemed to have me doing better, I still was sick frequently, but didn't allow it to keep me laid up. It may be that I was still as ill, just being a teen I wanted to be out with my friends and didn't let on to my family. Long story short. I had been seen by many doctors, five different allergists, many years of allergy shots, yet not one of the doctors tested my immune system. I read in a magazine about an allergist at a local teaching hospital when I was 61 years old and made an appointment. I was interviewed by the allergist who took a very detailed account from birth to present and sent home with orders for more blood work than I'd ever experienced. A month later I was finally diagnosed with hypogammaglobulinemia (low immune gamma globulin). Unfortunately, my personality and this doctor did not mix well - felt I was being treated as a "lab rat" rather than a person. Changed to the University of PA Penn-Presbyterian allergy group which had a "clinical immunologist" on staff. The difference being a regular allergist is not as experienced or trained in immunology as a clinical one has been. More testing revealed I really had Common Variable Immune Deficiency with low immune gamma globulin and low immune gamma A. My level of treatment was moved up from 50 grams every 4 weeks (I kept getting infected by the 4th week each month), to receiving my infusion every 3 weeks. This has made a world of difference in my life. I'm still cautious during cold and flu season, avoiding places like movie theatres, crowded malls, and anywhere there are large crowds of people. I mask when going to doctor offices and pharmacies, do not visit people in hospitals and have people use Purell when coming into my apartment. I have other major health issues, but the constant bronchitis, pneumonia and URI's are being held at bay for the time being. Life is wonderful and I appreciate it even more now that I'm feeling more "normal."

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