I have an immune disorder called selective IGA deficiency or SigAD. What it means is that the protein in the blood immunoglobulin is lacking a defense against upper respiratory and digestive system problems.
My long medical history proved something was amiss. I had sinus infections as a preschooler. Later, when was in college I had so many urinary tract infections I ended up hospitalized several times and was on antibiotics for six years! The frustrated doctors could not figure out what was happening. Finally, twenty years later a medical center prescribed extensive blood work to find out I had the IGA deficiency. There is no cure and while IV’s which boost immunity works with other immune deficiencies, they did not with this one. Twenty years after that, I was diagnosed with a rare blood cancer – MDS. I felt in my gut that the two were related – this was no coincidence and like Gibbs in NCIS, I do not believe in coincidences. However, when I asked doctors, they would tell me they did not know.
I could understand why. IgA deficiency or SigAD is often under diagnosed because it takes specialized blood testing, which few places provide. It manifests with frequent infections, in airways, sinuses, ears, mouth, eyes, and the digestive tract. It is believed around 25-50 % of people have this problem but it is often not caught. Treatment can only be administered by controlling the infections not attacking the disease. 1 in 500 Caucasians have this disorder. (Cleveland Clinic – Selective IGA Deficiency)
The similarity between this and MDS is striking. MDS often is not diagnosed because it takes a bone marrow biopsy to definitively confirm that. There have only recently been some blood tests to assist with the diagnosis.
When I was diagnosed with IGA deficiency in 1985, it was only after years of upper respiratory and urinary tract infections, plus being continuously told as a female by doctors that all my problems were “nerves.” I was relieved to finally know what was causing this and it was not all in my head. Fast forward to 2010. I had constant sinus infections and couldn’t shake them. My smart PCP noticed my anemia was getting worse and referred me to an oncologist. I could not even pronounce or spell this rare disease. Just how rare is it? The American Journal of Managed Care estimates there are between 60,000 and 175, 000 cases in the U.S. in 2022. I want to offer some perspective. According to the National Breast Cancer Foundation, there are over 3.8 million breast cancer survivors in the U.S. With two rare disorders I understood why there was little to no research on the link between my problems. I knew from my studies in my doctoral program that there has to be a certain number of participants in a study before any conclusions can be reached.
However, in 2023, I am lucky to be a patient of a well-known oncologist at the Cleveland Clinic. She told me that they had found a connection and my gut was right! She also explained there is a high correlation between patients with IGA deficiencies to melanoma. This allows us to be proactive and now I have a skin test annually.
I learned a lot from this whole experience that I want to share. Number one is to tell the doctors about every health problem so they can research and be ahead of the game. Sometimes a local hospital or cancer center may not have access to this information, which is why it is wise to keep connected to a major university like Cleveland Clinic, Mayo, MD Anderson, or Johns Hopkins. It is very important to be involved with the research centers. Urge your local doctors to be in contact with the larger centers so you are both up to date. I happen to go to both – I see my oncologist locally once a month and the one at the Cleveland Clinic every three months. Do not give up hope because it took from 1985 – 2022 to find this link. The positive is once doctors make the diagnosis and know what to look for; they can proceed to get information to help not only you but others. Modern medicine is amazing and many of us would not be alive without the researchers and testing done daily. Work closely with all your doctors because you might just save your life.
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