Learning the labyrinthine lexicon of cold agglutinin disease
To understand complex medical terms, I employed a strategy from my past
“Can we read ‘Go, Go, Go’ again?” My student was eager to revisit this story, one she’d successfully read the previous week. “Go, Go, Go” is one of the “Dick and Jane” emerging reader series by William S. Gray, which was popular in the 1950s. My student’s new skills opened marvelous worlds through reading experiences.
The challenge in teaching someone to read is finding a way to convert symbols into sounds and then putting those sounds together to form words. During that lesson, almost as an aside, I showed her how to read books like “Timbuktu” and “Constantinople.” We broke apart the long words and read just the syllables.
I mention all of this because I employ that same strategy when trying to read the vocabulary associated with my cold agglutinin disease (CAD), a rare, autoimmune, hemolytic anemia in which a person’s immune system produces antibodies that mistakenly attack red blood cells at low temperatures. These antibodies cause red blood cells (RBCs) to clump together before they’re destroyed in a process called hemolysis. It results in anemia, in which the body doesn’t have enough healthy RBCs to carry oxygen effectively.
A unique vocabulary
The first word I had to learn was “lymphoproliferative.” I spent several hours one Saturday in 2016 breaking it down into syllables to master saying it. Then I hit the dictionaries to figure out what it meant. It refers to conditions characterized by the excessive or abnormal proliferation of lymphocytes, a type of white blood cell crucial for the immune system. These conditions can be benign or malignant and associated with immune system disorders such as lymphomas, leukemias, and autoimmune diseases.
That didn’t sound good! At that point, I was in the watch-and-wait phase of diagnosis. A doctor in Singapore told me that a blood disease was developing, but they couldn’t tell which one. He explained that if I were treated for one disease and it was actually something else, the treatment could make that something else worse. Watch and wait became whine and worry.
The next word I learned was “agglutination.” It refers to the clumping of cells, particles, or substances, such as RBCs or bacteria. In the context of CAD, it happens when my RBCs are exposed to cold temperatures.
That differs from coagulation, which is the formation of a fibrin-based clot to prevent bleeding, a separate physiological process. It involves platelets, clotting factors, and fibrin to form a stable clot to stop bleeding. I recently learned this difference in terms when a reader gently pointed to an error I’d made in a previous column. It’s an important distinction.
I was familiar with the action of acrocyanosis for many years before my CAD diagnosis. I’d noticed some mottled skin coloration when I was in brisk weather. Acrocyanosis is a bluish discoloration of the skin that particularly affects the hands and feet but can also occur in other parts of the body. In CAD, it can be caused by agglutination, which prevents sufficient oxygen from reaching those areas.
This year, after doctors changed my cancer diagnosis, which is the underlying cause of my CAD, I added more large words to my vocabulary: Waldenström macroglobulinemia. Like my student with “Timbuktu,” I had to break them into parts to read and pronounce them properly.
Macroglobulinemia is a condition characterized by large proteins in the blood (hence the term “macro”), specifically a type of antibody called immunoglobulin M (IgM). Basically, the word tells me that I have thick blood. It also informs me that this condition is a slow-growing cancer and the prognosis is generally better than one might expect. I find that reassuring.
There’s a design principle known by the acronym “KISS,” which stands for “Keep It Simple, Stupid.” (I prefer a gentler reading of that: “Keep It Simple, Silly.”) Like my reading student, I find that simple words involving one syllable are easy to read. Cold agglutinin disease doesn’t involve many one-syllable words. I’m looking forward to a day when one in particular becomes part of the lexicon: cured.
Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.
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