Diagnosing CAD is like looking for a grain of sand on the beach
Only about 300 to 3,000 people have CAD in the United States
I love a beach day. I’m always good for warm, salt-water therapy. The sun warms my bones, and sand crunching beneath my feet softens and smooths my callouses. As the waves gently lap ashore, all is peaceful and calm.
Imagine being tasked with finding one special grain of sand on such a beach. One grain of sand looks like all the other grains of sand. A person would have to know specific characteristics of that special grain and be able to keep track of all the other possibilities to find that single one.
How rare is it?
Being diagnosed with cold agglutinin disease (CAD) is akin to finding a specific grain of sand on a beach. It’s a relatively rare disease, as only 300 to 3,000 people in the United States have it. Further, its symptoms can mimic many other diseases. Doctors generally follow the “KISS” principle — softly put, Keep It Simple, Silly — and look for more common ailments first. In my case, it took more than 15 years of accumulated symptoms before a hematologist put it all together.
There are billions, if not trillions, of grains of sand on this single beach. Try to find one specific grain. (Photo by Mary Lott)
Several tests are used to diagnose CAD, and only by putting the results together can doctors differentiate between CAD and other autoimmune hemolytic anemias. In my case, I was presenting with periphery symptoms such as breathing difficulties, low red blood cell counts, and jaundice at different times in my life. The doctors ruled out asthma, acid reflux, sarcoidosis, and other ailments before settling on my CAD diagnosis.
One of the most important tests is the Coombs test, which detects cold-reactive antibodies and the temperature at which agglutination occurs. A test I had in November 2020 showed that my cold hemagglutinins were 1:20,480 — a number that’s way off the charts. Just as it would take a microscope or scientific testing to show the specific mineral composition of a grain of sand, CAD tests are invaluable in differentiating it from other diseases. But other factors are involved as well.
One of the beaches we frequent to boogie board has fine-grit, black sand. When we want to snorkel or scuba dive, we go to a different beach that has a coarse-grit, yellowish-white grain. If only a particular grain of sand would stay on the correct beach!
CAD doesn’t do that. The tightness in my chest and the weariness of my breathing cause medical people to suspect a heart attack. The abdominal aches and pains might be appendicitis or irritable bowel syndrome. All of these were ruled out before settling on my correct diagnosis.
Experts and their machines put it together
If I were looking for a specific grain of sand speck by speck, I’d be embarking on a laborious and probably failing endeavor. I’m thankful that my doctor at the Spencer Cancer Center in Opelika, Alabama, requested multiple lab tests, reviewed my history, and ruled out incorrect diseases.
Cold agglutinin disease is one of many that will be acknowledged this Friday, Feb. 28, on Rare Disease Day. The hope is that by calling attention to these diseases, we can raise awareness and generate change for the approximately 300 million people who live with them globally.
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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Hazel Schmidthaze
When I first started this journey my doctor only gave me and another patient. Now he has 5 of us with CAD
Mary Lott
I'm thinking that doctors are becoming more aware of its possibilities and we'll see more diagnoses because of that. Imagine! We are on the forefront of scientific discovery. We're trendsetters. At least that is what I tell myself. It is important to bring awareness to this condition so that those who truly have it can adjust their livestyles. We are helping to save lives.
Michael
Thanks, Mary, I was diagnosed in November 2022. The heart surgeon refused to do open heart surgery because of cold autoimmune disease would create severe blood clots when bringing heart temperature down and dding 5 pints blood if necessary. He lost a patient from CAD on the operating table. Blood Clots were cause of their death.
Mary Lott
Michael, I am sorry that you were not able to receive the heart operation which you needed. Are you doing okay now? What type of adjustments have you had to make. I have read stories about changes in operating procedures due to patients having CAD. That seems to be a scary reality we face. Did you see this article from Feb. 6, 2025: https://coldagglutininnews.com/news/cad-likely-caused-blood-clot-brain-surgery-case-report/? In this case, although a dangerous situation developed, the surgical team made changes to address the problem and the patient received the help he needed. Let us know how you're doing.
Patricia Fowler
I would like to be able to communicate with people that have this disease to see how their symptoms are maybe similar to mine
Mary Lott
I highly recommend the Facebook group, CADdy Chatter. I have found a lot of information and always people who simply listen and are sympathetic.