The Top 8 Things Cold Agglutinin Patients Tell Each Other to Help Them Get Through the Day

We'll get to that, but first, it's important to understand what exactly CAD is and how to manage it.

Understanding Cold Agglutinin Disease

Cold agglutinin disease (CAD) is a rare type of autoimmune disorder where a person's body is being attacked by their own immune system.

CAD can occur on its own, but it can also be caused by several different things, including infections like pneumonia, immune conditions like lupus or blood cancers such as lymphoma or chronic lymphocytic leukemia (CLL).

When someone has CAD, their immune system mistakenly attacks and destroys their own red blood cells.

What is Cold Agglutinin Disease (CAD)?

It's called "cold" agglutinin disease because when an affected person is exposed to cold temperatures, certain proteins that normally attack bacteria (known as IgM antibodies) instead attach themselves to red blood cells and bind them together into clumps (known as agglutination), and these cells are eventually prematurely destroyed. This can lead to anemia (low red blood cells) and other issues. These symptoms may get worse due to lower temperatures.

"The treatment depends on what's causing the disease," Dr. Jun Choi, a hematologist and oncologist at NYU Langone's Perlmutter Cancer Center, told SurvivorNet during a conversation about the condition.

The treatment options for this disorder depend on if the patient has an underlying condition and what that condition is. In some cases, treatment may not be necessary.

Treating Cold Agglutinin Disease (CAD)

Dr. Roy Smith, a hematologist and oncologist at the University of Pittsburgh, told SurvivorNet that in some instances, simply avoiding the cold may be all the treatment someone needs.

However, when cold agglutinin disease is caused by a blood cancer like lymphoma, your doctor may suggest chemotherapy or a targeted therapy to get the underlying condition under control.

Top 8 Things to Get You Through the Day

1. The first thing is exactly what Dr. Smith said: simply avoiding the cold. "Often, it's a matter of just telling a person to wear gloves or a coat, (to) keep their house at a higher temperature … something along those lines."
2. Move to a warmer place, if you can! Just like wearing gloves or a coat can help, living in a warmer climate can also help manage your cold agglutinin disease symptoms.
3. Air conditioning units usually come with living in a warmer place, so make sure to be caution around them, as cold temperatures can be triggering.
4. Patients should avoid extreme cold, which can make the disease worse.
5. "When you need blood transfusions for low blood cells, we ask the blood bank to warm up the blood," Dr. Choi said.
6. Stay away from cold food and drinks! But make sure to talk with your doctor before making any changes to your diet.
7. Keeping track of how you're feeling and staying in touch with your doctor are important parts of managing CAD, according to CAD unraveled. Keeping a journal with notes about your symptoms or any advice your doctor has given you is a great way to manage your disease, as well.
8. Just like other immunocompromised people, it’s important to say on top of your general well-being, not just CAD management. That includes avoiding contact with sick people, getting plenty of rest, maintain a well-balanced diet and moderate exercise!

Contributing: SurvivorNet staff reports

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