A few calculations help me paint a picture of all my fellow ‘CADdies’

“How would you like your steak cooked?” the restaurant server asked, pausing for me to answer. The others at our table erupted in laughter. They knew the answer.

“Rare! Cool on the inside and seared on the outside.” There’s a standard joke in my family that with a bit of iodine and a Band-Aid, my sacrificial steer would probably live. Not many people enjoy rare steaks as intensely as I do.

Rare doesn’t just apply to my steaks and hamburgers these days. It also applies to my cold agglutinin disease (CAD).

CAD is a rare autoimmune disorder in which self-targeting antibodies attack and destroy red blood cells at low temperatures. The symptoms are varied and include anemia, breathing difficulties, cold extremities, fatigue, pain, and even heart issues. The primary method of dealing with CAD is to avoid becoming cold and thus starting hemolysis (the destruction of red blood cells).

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Defining rare

Mary’s steak, in front, requires only three more minutes on the grill. (Photo by Mary Lott)

The restaurant servers invariably follow up with an explanation that rare means “cool center” while “medium rare” is “pink center, slightly warm.” Still, there’s sometimes confusion in defining a rare steak. There’s often confusion when explaining the rare disease CAD, too.

The most frequent response I get to my condition is, “I’ve never heard of that.” In trying to form a mental picture of how rare cold agglutinin is, I looked up some statistics. In the United States, one source claims, there is 1 CAD patient for every 80,000 people. Another source claims between 300 and 3,000 people in the U.S. have CAD. Those are nice, nebulous numbers. I can’t visualize how many that is.

I envisioned all the “CADdies” lying down, feet-to-head-to-feet, stretching from my house in Auburn, Alabama, to — where? I expected this fictitious line of very willing CADdies to stretch from my house to Texas, or at least, surely out of Alabama. I did some calculations. I looked up the average height of a U.S. adult female: 5 feet, 3.5 inches. Then I multiplied by 3,000, the largest estimate of CADdies in the U.S. That equaled 190,500 inches, or 15,875 feet.

I fly a lot. If the CADdies were standing on each others’ heads, the line wouldn’t stretch more than halfway to some cruising altitudes. The seat belt light would’ve just been turned off.

I understand miles and distances. To figure out how many miles the combined length of CADdies covers, I divided the number of feet by 5,280, the number of feet in a mile. The answer was only 3 miles. That’s as far as it is from my house to Jordan-Hare Stadium, where the Auburn University football team plays. I used to walk that in about half an hour.

CADdies are not enough people to stretch out of my town. Or to describe it another way, the largest Presbyterian church in Alabama has more members than there are CAD patients in the U.S.

Rare Disease Day

This Thursday, Feb. 29, is Rare Disease Day. Its purpose, according to a National Institutes of Health website, is “to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives.” Cold agglutinin disease has definitely earned its place. By sharing what I’m encountering as I make adjustments in my life every day, I can increase awareness, thereby helping other CADdies who face these same challenges.

Many of the challenges we CADdies face involve getting diagnosed in the first place. Frequently doctors haven’t heard of cold agglutinin disease, or they learned of it going through school and forgot the details since they haven’t encountered it since. We need to be proactive in bringing awareness of our rare disease.

A participant in an online forum recently shared her diagnostic journey. First, she had an abnormal and “concerning” complete blood count. Sometime later, the diagnosis progressed to anemia. Finally, she moved to “autoimmune hemolytic anemia” and later to CAD, for which she’s receiving treatment. This progression seems to take years, even decades, to conclude.

Highlighting Rare Disease Day can make doctors and other caregivers more aware of diagnostic possibilities, which helps bring health and healing to CADdies everywhere.

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.