In 2001, 46-year-old Megan Ryan was diagnosed with Common Variable Immunodeficiency (CVID), one of the most common types of primary immunodeficiency diseases, or PIDD, which are rare genetic disorders that affect a person’s ability to fight infections. PIDD can cause a wide range of symptoms, in part because there are so many different types: about 500 are known to scientists today, and new disorders are discovered every year. Here, she shares the impact her condition has had on her life, as told by health writer Korin Miller.
I was 24 and fresh out of college when I saw a doctor for random leg pain. They performed a series of tests, during which they discovered an unrelated problem: my blood proteins were abnormal, so they referred me to an immunologist. I didn’t think much would come of it when I made the appointment. These pains ended up being harmless and went away on their own, but accidentally discovering the issues with my blood proteins along the way led to me receiving a life-changing diagnosis.
The immunologist told me that I had common variable immunodeficiency, a type of primary immunodeficiency that causes low levels of antibodies in the blood. CVID is relatively rare: approximately one in 25,000 people develops it, and researchers aren’t quite sure what causes it. (My leg pain turned out to have nothing to do with CVID.) I learned that this disease meant I was more likely to get bacterial and viral infections in my sinuses, respiratory tract upper and lungs, as well as digestive problems such as diarrhea and the liver. problems, among a host of other potential complications. I was no stranger to frequent, unexplained illnesses: As a child, I had a long bout of chicken pox and cat scratch disease. In college, I seemed to get all the bugs that went around, leading to issues like pink eye and sinus infections. I just assumed that I was someone who was constantly sick, not that my immune system had to work harder than most people.
After receiving my diagnosis, my doctor recommended that I start immunoglobulin treatment, in which a health care provider injects human plasma from donors to increase a person’s levels of immunoglobulin (the antibodies primarily responsible for defending your immune system against infections). I had IV infusions that sometimes lasted all day. Fortunately, my job allowed me to work remotely while I received treatment – and that was important: I needed health insurance through my employer to help pay for all these procedures. expensive.
Around this time, I developed a rare gastrointestinal condition called malacoplasia of the colon,1 which gave me chronic diarrhea that took over a year to get under control. It was one of the hardest times of my life – I lost a ton of weight, was constantly tired, and went to the bathroom often. I eventually recovered with antibiotics, but the illness suddenly reminded me to do my best to avoid getting sick. I started using curbside pickup at the grocery store, wearing masks during flu outbreaks, and going to outdoor concerts with good air circulation instead of indoor shows. I also told my relatives to keep their distance if they were sick: if a friend’s child had a cold or the flu, we did not get together. When my husband gets sick, I take extra precautions: one of us sleeps in a different room, and I sanitize my bed sheets, wipe down the countertops, and wash my hands a lot. Sometimes bleach is my best friend.