The Bard was wrong: Why names are important for ‘CADdies’

In March, a prayer request was passed through our expatriate community here in Indonesia. Someone was suffering the lingering effects of a bout with dengue fever. A follow-up message soon arrived detailing what was happening. This person had low hemoglobin levels, was weaker than expected, and was a little yellowish. Their persistent out-of-breath feeling was attributed to these low hemoglobin levels.

Reading this, I had an immediate flashback to my pre-diagnosis days and wondered if this person may have cold agglutinin disease (CAD) like I do. CAD symptoms are often attributed to other conditions.

At the present time, this community member is in the hospital with an infectious disease doctor checking to see if dengue fever was the correct diagnosis, or if perhaps they have another disease entirely. I have thought about writing and telling them to consider CAD. This is why:

Recommended Reading

March 27, 2025 News by Margarida Maia, PhD

Report: Woman’s cold agglutinin disease secondary to blood cancer

Challenges of diagnosis

A common question among “CADdies,” as those of us with CAD call ourselves, is: “Are my symptoms from CAD or something else?” Getting an accurate diagnosis is a challenge, as symptoms can point to multiple diseases. CADdy Chatter, a Facebook page hosted by the Cold Agglutinin Disease Foundation, is full of stories of people receiving misdiagnoses before finally arriving at CAD. Even so, there is a lot of questioning and doubting based on our experiences.

This is a rose from the garden I was weeding. It has its own characteristics, needs, and smells. It is not a water lily. (Photo by Mary Lott)

The community member’s plight jolted my memory back to 2008. My husband and I were at our home in Auburn, Alabama, and my daughters were still living with us. One morning I was slowly pulling weeds in my rose garden. I was able to breathe, but I felt as if there were an elephant sitting on my chest. One of my daughters happened by. She took one look at me and said, “Mom, you don’t look so good. You need to get checked.”

I smiled at her and said, “I’m just tired. I’ll be all right.”

She said, “No. You need to go to the emergency room right now.”

I went to the ER, where doctors immediately checked for heart difficulties. My heart was fine. I was told to go home and rest, but if my symptoms continued, I should seek help from an internal medicine doctor. That began a long period of searching for a complete diagnosis.

I was already being told I was anemic, and I had a high white blood cell count. I now was told I obviously had an infection somewhere; the doctors just couldn’t find it. But that was the reason I didn’t feel well, they said.

Possible maladies

When I had a fish pond, I also grew water lilies. It doesn’t smell anything like a rose. (Photo by Mary Lott)

By the time all was said and done, I had been tested for heart disease, angina, and aortic dissection. I did a barium swallow test to see if I had gastroesophageal reflux disease, also known as GERD.

I was having a lot of urinary tract infections, which seem to be common in CAD, to the point of being hospitalized with a serious kidney infection. I remember that episode as starting out with malaria-like symptoms and progressing to extreme fatigue and brain fog. While the infection was an accurate diagnosis, those latter two symptoms are also hallmark symptoms of CAD.

Finally, in 2016, I journeyed to Singapore from my home in Papua, Indonesia, to finally track this down. The doctor there said, “We can’t tell what you have. It is either sarcoidosis or perhaps a form of leukemia. We need to watch and wait [to see what develops].”

“Watch and wait” immediately turned into “whine and worry.” But I felt that I was finally getting closer to a diagnosis.

Shakespeare was very wrong

All of this is to say that Shakespeare was wrong when he had Juliet tell Romeo, “What’s in a name? That which we call a rose, / By any other name would smell as sweet.” Juliet is saying that their names don’t matter; it’s their love that’s important.

But for CADdies, names do matter. Without an accurate diagnosis, there cannot be proper treatment. Without treatment, our health will just get worse. I’m glad that in 2018, my doctor finally got the name right.

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.