I have wondered from the time of my cold agglutinin disease (CAD) diagnosis if it was activated by having been sick in the first month of the COVID-19 pandemic. From my own experience, I learned people could have underlying conditions for years before being diagnosed, and at times contract something unrelated. 

In February 2020, I was working part-time as a cook and the entire kitchen was sick with what we thought was the flu. Two weeks later we were in total country-wide lockdown as COVID began to sweep the nation. And 6 short months later I began to get sick, which ultimately led to my CAD diagnosis.

Over the years, I have had odd symptoms and went to multiple doctors. My blood work, apart from one time, had shown my hemoglobin (HGB) within range. On my first visit with a  hematologist, he said that my CAD was probably from a previous walking pneumonia. He felt that it was possible that when it clears my CAD would subside. I started to think that there had to be a correlation between my sickness at the beginning of the pandemic and my CAD diagnosis. At that time, we were not testing for COVID; we were under stay-at-home orders. There was no way for me to know at the time.

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However, I started reading about various studies that reinforced the emerging notion of a possible connection between an initial illness prior to the CAD diagnosis. Research had been done on hospitalized COVID patients where they found that a percentage of patients had autoimmune antibodies and/or newly diagnosed autoimmune diseases. These are often found in people with autoimmune diseases. These autoantibodies are the underpinnings of many autoimmune diseases. I find this to be very interesting as CAD is supposed to be a very rare blood disease, yet every day more and more people are joining the Facebook support group I belong to and have discovered that many of them were diagnosed within the last 2 years. 

Could this be coincidental? I’d like to know. I would also like to know how many of them had COVID. A lot more research needs to be done but from what has been reported thus far there seems to be a direct correlation between SARS-CoV-2 and autoimmune diseases. 

As for me, I did wind up with the Delta variant of COVID-19, this after 2 vaccines and taking every safety precaution. I was terrified, as reports are typically all over the place as to how severe it could be. A lot of discussions focus on the symptoms but very little can be found on how to home care. Luckily, I found an article a nurse posted on best practices from home. I bought everything needed and hunkered down in my room for 2 weeks. Right before I got sick, I had heard about monoclonal antibody treatment and contacted my doctor immediately. The window for effectiveness is within 10 days, 5 days being the most effective. I received it on day 8, as I was on a waiting list. 

Read more about the diagnosis of CAD

I was lucky enough to receive Regen-Cov monoclonal antibodies. According to the FDA, “Monoclonal antibodies are laboratory-made proteins that mimic the immune system’s ability to fight off harmful pathogens, such as viruses like SARS-CoV-2.” I was given 4 injections, 2 of which were very painful. I am thankful that this treatment was available as during the virus’s progression I realized my moderate COVID could have been severe. 

I was and still am fearful of contracting the virus due to having an autoimmune disease. Luckily, I made it through. It took 5 solid weeks for some of the symptoms to wane, including a rapid heart rate without exertion and breathlessness, which happen to also be CAD symptoms. My biggest fear after I got through the cough and breathlessness was my hemoglobin levels. I felt for certain that my HGB dropped, but I soon learned at my next hematologist appointment that my HGB increased by 1.5, bringing it up to 10.8. This was the highest it had been in nearly a year and a half, and it was attributed to the Regeneron injections.

In fact, in my hematology-oncology office, I learned that one other patient experienced an HGB increase much like mine and a third who had severe joint pain in their hips found it completely went away. 

I will never know if what I caught at the beginning of the pandemic had anything to do with my CAD or if now having had COVID will cause a secondary autoimmune disease. I do find it interesting that autoimmune diseases are on an uptick currently. It’s a scary topic that needs in-depth research.

I would go even further to suggest that genetic counseling should become a part of our lives from a young age. Would that have stopped people with COVID from having an autoimmune response? Probably not. But it would arm our practitioners with knowledge, and this knowledge would help doctors treat patients based on their individual needs.