I believe in helping other patients with Primary Immune Deficiency.

Joanna - staten Island, New York
Entered on September 16, 2008
Age Group: 30 - 50
Themes: illness, science
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I was born in 1972 with a primary immune deficiency called hypogammaglobulinemia which is a deficiency of the main antibody defense against bacteria. No one knew at the time of my birth. I was a normal healthy baby the first 6 months of life probably because thats when a baby still has some immunity from its mother. After that I had some weight loss and lots of vomiting which doctors called failure to thrive and they switched my formula around a lot. Later as I grew, I had pneumonia more times than I can count, chronic ear infections and ear drum ruptures so I had only 30% of my hearing left in one ear, bladder and kidney infections, swollen lymph nodes,liver, & spleen and we were regulars at the emergency room, we were referred to an infectious disease specialist who became my primary doctor. They knew from an early age that I did not have a full immune system but my mother feared dependency on gammaglobulin replacement would interfere with my immune systems ability to develop and so she wanted to wait till I was 12. My infections were treated with antibiotics which didn’t always work on me. On average I missed 30-60 days a year of school but maintained good grades. When I was too sick for school I’d lay in bed and watch channel 13 or after school hours sit by my window and watch other kids play. When I wasn’t sick I had a normal happy childhood. We never talked about what I had and we never meet another patient.

At 12 when most kids immune systems are fully developed, my immune system was retested and gammaglobulin was recommended. My mother was afraid because its made from human blood products, the shots are considered painful and she feared my own immune system work work less and decided against treatment. My doctor told her I would not have a normal life. We left the doctors office and I was never brought back. We never talked about my immune system again.

My teen years were a bit healthier, but I think only because my peers had fewer infections and I grew to forget about my deficiency and worked hard at staying healthy and normal. My college years were average, but when you have a disorder your whole life you make adaptations that your not really aware are different. When I selected my classes I would try to get a course outline and start reading my texts and do as much work early as possible to allow room to be too sick to do work and not get behind. I was top in most classes and won scholarships and awards. Still these years were hard and I also started suffering from terrible headaches that would cause vomiting and last for days. I never knew when illness would strike. Once I woke up in agony, unable to move or speak, and threw up for several days in a heat wave with no water or air conditioning. A neighbor realized something was wrong and found me and brought me to the emergency room where I was re-hydrated. No one guided me medically and being young and naive I handled each failure of my body the best I could and when I was well I worked harder than most people to keep up on things that were important to me like school. After college I worked briefly but was always collapsing and being taken to the emergency room. Once I woke up barely able to walk and & in tremendous pain in my abdomen. I called an ambulance and was going into shock by the time I arrived at the hospital. They did an emergency exploratory surgery and found internal bleeding but couldn’t tell me why.

I wasn’t dating my husband long the first time he saw me really sick. I was so embarrassed I told him to leave but he wouldn’t. He convinced me it wasn’t normal and he started bringing me to see doctors he knew. From my blood work they would always ask what kind of chemo therapy I was on because my platelets were so low. I went for so many tests and after my stepson started school became so sick all the time that I truly feared for my life. I had brief periods of being OK, but mostly I was always sick, had trouble breathing, no appetite & coughed constantly. I developed nodules on my lungs and growths that had to be watched. Still I did the best I could to take care of myself and my family, but here’s where not having a name for a problem becomes really cruel. I physically suffered and was mentally tormented by not understanding why I just couldn’t be OK. I was young, ate good, exercised, got enough sleep, didn’t drink or do drugs. Why couldn’t I just be OK enough to function & to stay out of the emergency room with frustrating and scary problems that I never got complete explanations for? To make matters worse my in-laws didn’t like me and they felt I was lazy and faking my illness. Other geniuses offered such kind advise as that if I were a REAL parent and not a step parent I wouldn’t catch everything my son had and wouldn’t stay sick all the time. Others thought my immune system needed to be built up and some deliberately exposed me to their colds, flu & strep throats. Each time I got anything I basically lost a month or more of my life and suffered terribly. It meant housework, childcare, everything was so hard and no one seemed to understand or care except for my few closest friends.

Finally one night in my mid 20’s I had a dream with an angel in it that told me that my immune system needed to be tested and I needed shots. My husband thinks this was my subconscious remembering what we all forgot from my childhood. During my next visit to my primary which was then 1x per week to monitor my platelets I told her about my dream. She told me that no one ever has anything wrong with their immune system but that she’d test me anyway, but that if I kept talking to angels that maybe I should see a therapist. A week later my tests came back that I had 2 deficiencies- hypogammaglobulinemia & hypocomplementcemia. It wasn’t till I was on treatment a while that I learned I only had 1 deficiency- hypogammaglobulinemia, but that a deficiency in one area can make you low in others. That’s also why my platelets get low. And as it turns out my diagnosis and history was in my charts all along! Anyway, that’s when I finally saw an infectious disease specialist and started antibody replacement therapy which is amazing because they take the antibodies out from thousands of blood donations to give you a wide range of antibodies in each injection. At first even my husband was in denial about my diagnosis, but he learned to give me my IM injections of gammaglobulin. The shots are a treatment not a cure, but my doctor said I’m an excellent responder. Gradually I got healthier and stronger. I finally know what having an appetite is. I sometimes now just get sick for a short time-its not always months to get well from each bug. I am still very careful to avoid getting sick and get enough rest, but treatment has given me over 10 good years without too many side effects. I’m now on IM shots 2x a week and am healthier than ever. The only problems I had was with availability, and in May 2005 I started a yahoo group I called genetic immune deficiency in response to a MONTH long wait without my shots due to a production problem, with no contact from anyone or advise on what to do, that I read in our paper resulted in 3 other patients dying. It was then that I wanted to find other patients, so I wouldn’t stand alone and neither would anyone else. I did meet one patient in 2005 and since have found several others and some have found me. I’ve recently found a larger group that is doing a lot to help patients and families and I hope to volunteer. Awareness of immune deficiencies will help getting children diagnosed sooner and also help ease the difficulties of living with a PID. I feel lucky every day that things turned out as well as they have for me given all I had going against me. I am grateful for everyone involved in my care including blood donors who make treating my disorder possible. I don’t want anyone to have to struggle like I did. If my experience can help someone else or help make a positive change, it makes what I went through all worth it.