My name is Joanna and I was born with hypogammaglobulinemia, which is a Primary Immune Deficiency Disease (PIDD) and a genetic defect of the immune system. It often takes a ridiculously long time to be diagnosed with PIDD, on average of nine to twelve years! Many patients are treated like they are crazy or told that their ailments are “all in their heads. ” Yet they are really living with permanent damage to their lungs or other organs.
On top of it, some patients have trouble accessing proper treatment and care. Even if all goes well, patients like me still struggle with managing infections, side effects and living with a disease that is poorly understood by many – even by those closest to us.
Since early childhood, I’ve suffered from a list of maladies; failure to thrive, pneumonia, bronchitis, asthma, chronic ear infections and hearing loss, bladder and kidney infections and swollen lymph nodes. Each individual issue was treated by doctors but the underlying cause was never addressed.
No one ever told me the name of the disease I had, and it wasn’t until my early 20′s when my conditioned worsened that I finally began receiving answers about my disease and the potential treatment for my primary immune deficiency which is called immune globulin (made possible by plasma donations).
Without immune globulin I suffered from frequent and severe infections, migraines, vomiting and dehydration, and even low platelets. Before treatment I had one instance where I had internal bleeding and another where I lost all control over my body and couldn’t move or speak for days, but mostly I just had severe infections that would land me in bed a month or more at a time. I had no appetite, was often in pain and also had trouble breathing. I got sick so easy that new infections were really impossible to avoid no matter how careful I was. It seemed I was almost always sick.
Antibody replacement therapy which is made by pooling approx. 60,000 plasma donations per batch & removing just the antibodies, has helped me to have fewer and less severe infections, more energy and less pain. I get infusions of these antibodies weekly. I am usually able to go to the gym, enjoy bike riding and take care of my family, home & pets. I no longer have complications from the infections that I used to and I do tend to recover in a more normal way.
I enjoy a happy life with my family and mostly do so well that few would ever guess there was anything wrong with me unless I tell them. I’ve been feeling well enough that I’ve been able to volunteer with the immune deficiency foundation which is the national non profit patient organization dedicated to improving the diagnosis, treatment & quality of life for patients with primary immune deficiency diseases through advocacy, education & research.
I find there are so many reasons to have hope. For one thing many PIDD patients can enjoy lives that were not possible years ago. The longer each one of us lives, the better the treatments may become. There is also hope and healing in the community; thanks to the Internet, it is possible to meet so many people who share your experiences even if they are rare.
I have found that goal setting is very important. Goals give you a reason to fight and a reason to hope. My goal is to raise awareness of PIDD so that all future patients like myself will have an easier time with everything. Hope blocks fear, insecurity and even pain. Hope can make the impossible possible, especially if we break our goals into small steps that can be taken even with our chronic health conditions. I don’t know where hope really comes from.
I’m guessing, Hope is in our genes – just as the disease is in our genes. Perhaps our fight is not just a physical one but is also a fight of hope against the disease.