Cold temperatures can cause coagulation in ‘captive spaces’
It's crucial others understand the potential health repercussions we face
I glanced around the sanctuary to see where the heating vents were located. Selecting a pew not too far away from one was difficult because the vents were in the ceiling. I sat down and began arranging my coats, sweater, and mufflers to be easily accessible if I needed them. The outside temperature that Sunday morning in January was in the low 50s F. My breathing became labored and trouble began.
Church sanctuaries are large spaces inside buildings that create a bit of environmental confusion. An effort is made to heat the area. Sometimes the temperatures rise. Sometimes the heat is turned on late and the temperature is still chilly at the beginning of worship. The number of bodies inside the church makes a difference, too. More people equals warmer spaces.
This particular Sunday, I started to sing, “Holy, holy, holy.” I took a breath to sing a four-measure musical phrase on a single breath, and … nothing. My voice shut down. Cold air hitting the surface area of my lungs caused a contraction and started the process of agglutination in my blood.
One sanctuary where we have worshipped. This is a large space with a difficult-to-control environment. (Photo by Mary Lott)
The problem is prevention
Cold agglutinin disease (CAD) is an autoimmune hemolytic anemia where at low temperatures our red blood cells clump together and then dissolve. This breakdown process is called hemolysis and presents many varied symptoms. Among these are fatigue, lethargy, foggy thinking, and breathing difficulties. I’m one of the 300–3,000 people with CAD in the U.S.
A major problem we CADdies have is remaining warm. By the time we feel cold, hemolysis has already begun. Therefore, it’s imperative to control our environment as much as we can. We put on extra layers of clothing and wear gloves and socks. I often wear a mask to warm my breath. Sometimes, however, we cannot remain in a warm place.
Too many times, those in authority who demand our presence in “captive spaces” — places where we cannot control the environment — fail to grasp the importance of our remaining warm. A friend recently shared the suggestions he was given when summoned to jury duty.
When told of his CAD, the bailiffs claimed they didn’t control the temperature of the room. They told the CADdy to dress in layers, and if he became cold, he could go into the hall to warm up. But I cannot envision a judge stopping a trial so a jury member can go warm up.
It was further suggested that he “make the judge aware” of his special request to keep the courtroom warm. It seems to me that by making this request, my friend was doing exactly that. The last suggestion was to request a seat in a warm part of the area.
These suggestions may seem reasonable to a non-CADdy, but they miss the importance of preventing exposure to a cold environment. CADdies must be proactive, not reactive, if we wish to avoid hemolysis.
The importance of being proactive
There are a few ways we can be proactive. First, we need to make others aware of the challenges we face and what may cause hemolysis. In essence, we must be our own advocates. Ours is a rare disease, which means that many, including in the medical profession, are unaware of the disease and its ramifications.
We should be open and share about cold agglutinin disease. I’m doing that with this column. Others may share pictures of their blue fingers and toes along with their stories. We can refer employers, judges, and those needing to learn more to websites such as Cold Agglutinin News. Education about CAD is key.
A third way to be proactive is to carry with us a document from our medical team, stating what we have and what is necessary to prevent a serious medical situation. We shouldn’t hesitate to supply additional references. By doing so, we bolster our requests for accommodations.
My friend’s dilemma
My friend faced a dilemma when summoned for jury duty. His request for disability accommodations was denied. The penalties for ignoring a jury summons can be more burdensome than showing up. If my friend attends, however, he’ll have a sword of Damocles hanging over his head because of the possibility of serious health repercussions.
As he told me via email, “finding oneself in a ‘captive space’ either voluntarily or involuntarily … can turn into a serious medical situation for those with CAD.”
It’s crucial that others understand the potential impact of this unpredictable disease.
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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