Why technicolor fingertips spell trouble for CAD patients

I jammed my hands as far as I could into the pockets of my jacket, hoping the rough, gray wool would provide more warmth to my cold fingers. Beth, my daughter whose graduation we were celebrating, was focused on the sign at the side of Samford Park that welcomed visitors to Auburn University. We were awaiting her turn to sit in front of the sign, where I’d take her picture in her graduation gown.

Finally, it was her turn. As she sat down, I lifted the camera and prepared to click the button.

“Mom! Your hands!”

I stopped looking at the camera and looked at my hands. They were slightly painful, and I could feel they were swollen. Both of them showed splotches of red, white, and blue.

I was cold, although the temperature was only in the 50s, nothing odd for December in Auburn, Alabama. Yet my hands were reacting as if it were below freezing. I’ve since learned this syndrome is a common occurrence for those with cold agglutinin disease (CAD).

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Cold agglutinin disease is a type of autoimmune hemolytic anemia. It becomes apparent when our red blood cells are exposed to a cold environment. The cells clump together and then dissolve, a process called hemolysis. The result is hemolytic anemia. People who have CAD are often tired, weak, and prone to infections. The main way to prevent this from happening is to avoid becoming cold. In my case, being aware of the color of my fingers and toes warns me that I need to find some heat.

I’ve learned through internet research that my skin condition is probably livedo reticularis, which is associated with my CAD. I’ve heard that many “CADdies,” as those of us with CAD refer to ourselves, complain of similar maladies, such as acrocyanosis or Raynaud’s phenomenon.

To find out how widespread these conditions are, I conducted a nonscientific poll in a CAD chat group. Of 80 respondents, 44 have experienced acrocyanosis; 36 have had Raynaud’s; and only a few reported having neither. (The latter option has apparently dropped off the Facebook poll, but I did initially include it.)

This topic is important to CADdies because exposure to cold weather is one of the triggers of hemolysis. Because hemolysis occurs in the blood, the aforementioned conditions are frequently visible and often confused with one another. Livedo reticularis is a temporary condition characterized by a fine, bluish-red or reddish-brown, lacelike pattern. Acrocyanosis — a bluish, mottled coloration of the skin on the hands, feet, or face — is very similar.

The more common discoloration is from Raynaud’s phenomenon. It’s seen when one or more fingers turn extremely white, followed by blue or a dusky color. That’s happened to me once. I had no idea what was going on, but I guessed there wasn’t any blood in that finger. I popped the finger into my mouth and began sucking on it. The blood soon came back and my color returned.

I was concerned when it happened. While I was fairly certain it was related to CAD, I brought it up at my next doctor’s appointment.

To me, it doesn’t matter which of these conditions I have, especially since I think I’ve seen all three. When my fingers begin to turn colors, I reach for chemical hand warmers. I put my hands into my lined leather gloves. I make sure I have at least one pair of socks on in my sneakers. Then, if the situation allows, I start to move. The movement makes my blood circulate more, bringing needed oxygen to the affected digits.

In the United Kingdom, February is Raynaud’s Awareness Month. That’s fitting because February is one of the coldest months in the Northern Hemisphere. Yet no matter what time of year it is when the weather turns cold, paying attention to the color of our fingers is one step in monitoring our disease.

When my daughter graduated from college, I wasn’t going to let my skin color diminish the celebration. When she asked if I needed to stop taking pictures of her, I replied, “Let’s continue! You’ve worked hard, and I don’t want to miss this moment.” Even though there was a price to pay later, some things are worth it.

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.