I have cold agglutinin disease (CAD), a rare form of autoimmune hemolytic anemia (AHIA). More than any other factor, it is an annoying disease. At least, that has been my experience thus far.
The thing about having an autoimmune disease is that it starts a journey of discovery, research, and so much more. My mom was diagnosed 30 years ago with Graves disease, which was discovered after we noticed one of her eyes starting to protrude. It was very odd. She went to the doctor, and after many tests, he gave her the diagnosis, which is associated with the thyroid. Her doctor said he needed to remove her thyroid, “The sooner, the better.”
In typical mom fashion, she told them, “Nope, just hold on.” Before the easy internet access of today, she did her research; she studied numerous books on the thyroid. In particular, she found that diet and exercise could help her.
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Removing her thyroid was a huge deal. Taking out an organ regulating the entire body seemed “stupid,” as she put it. Her doctor wholeheartedly disagreed, but my mom was steadfast. It took a year, but during her final follow-up appointment, the doctor discovered her problem had, in fact, resolved. Her doctor was blown away and asked if he could document it.
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Fast forward years later, and it was found that Graves disease can be reversed with diet and exercise. My point is that unless a disease will put you on a path toward imminent danger, take a breath. Think about what you are doing and what is suggested that you should do.
I am very much like my mom. Luckily for me, however, I do have the internet. My hemoglobin has been steady, and I have primary CAD, which affords me the time to do research. I also feel fortunate that in just the 3 years since my diagnosis, a great deal of information has been published on CAD. After Sanofi gained FDA approval for sutimlimab (Enjaymo®), it seems many more drug companies are working to get into the CAD game with other trials. Fingers crossed that more options are approved.
I recently read an article where a 42-year-old woman went to the hospital complaining about typical CAD symptoms, including rapid heart rate and shortness of breath. She was misdiagnosed, and it was assumed that because she had heavy periods and liver disease, that those were the cause of her symptoms. The hospital released her after bandaging her up with a red blood cell transfusion, which, of course, raised her hemoglobin, and the hospital felt she was fine. She returned after a couple of weeks, and after lengthy testing, it was discovered she had both warm and cold agglutinins. The hospital gave her several rituximab (Rituxan®) treatments that put her into remission, but after many months, the autoimmune hematolytic anemia would return.
They realized, however, that the patient had also been treated with risankizumab (Skyrizi®) for psoriasis, which is an IL-23 inhibitor. After treatment with risankizumab, she no longer had CAD, and her hemolysis was gone. There are calls for further research into the use of this drug for CAD.
This is just one example of off-label use, which in this case was by accident. It is legal and happens all the time. It will be a topic of conversation for me and my hematologist.
I have met many people that have CAD, and the conversation is always filled with confusion, worry, stress, and what to do to cope. I am not an expert nor a doctor; I can only share my experiences. When I am feeling stressed and it’s a warm day, I take off my shoes and socks and walk around in the grass because, for whatever reason, it fills my soul, and when I want to scream, I write down those thoughts, and if I don’t want anyone to read them, I burn them. There is something so cathartic about doing that.
I do understand exactly how those of you with CAD feel, and believe me when I say, you are stronger than you think–you got this!
