Raising Awareness of Cold Agglutinin Disease

Cold agglutinin disease (CAD) occurs in only about one in 80,000 people. Due to its rarity, most physicians are unfamiliar with the disease. That could be problematic, particularly if a medical emergency such as a hemolytic flare-up or heart issue arises. Following is some information about CAD awareness and efforts to heighten it.

What is CAD?

CAD is a type of autoimmune hemolytic anemia, in which the immune system produces antibodies called cold agglutinins. When exposed to low temperatures these antibodies mistakenly attack the red blood cells and cause them to burst, a process called hemolysis.

CAD may manifest as a primary disease, in which the underlying cause is unclear, or as a secondary disease caused by other issues such as infections, certain types of cancer, or other autoimmune diseases.

Why is disease awareness important?

Like many other rare diseases, CAD remains a severely under-diagnosed or misdiagnosed condition and one that often is misunderstood.

Most physicians and other healthcare professionals have little knowledge of the disease, which can resemble other autoimmune disorders. As a result, many patients can go years without knowing the underlying cause of their symptoms.

The sooner a patient receives a CAD diagnosis, the sooner treatment can begin. This can help maintain or improve their quality of life.

Greater awareness also tends to bring more research support, which could lead to new and better therapies, and possibly a cure for CAD.

Raising awareness

A study comparing healthcare resource utilization in CAD with a demographically matched non-CAD group found that CAD places a substantial burden on patients and healthcare systems. Researchers concluded that disease awareness and better diagnostic practices may be needed.

Rare Disease Day does its part. Each Feb. 28, patients, caregivers, and advocates all over the world paint faces, wear denim ribbons and zebra-like stripes, contact policymakers, flood social media platforms, take part in academic and community discussions, and hold fundraisers — all in the name of raising awareness of rare disorders, including CAD.

Additionally, the Cold Agglutinin Disease Foundation seeks to foster and increase public awareness about the diagnosis, management, and treatment of CAD. The foundation regularly publishes news and events about the disease  on its website.

Sanofi Genzyme, which makes an investigational medicine called sutimlimab, has a website called understandingcad.com that intends to raise CAD awareness by educating healthcare professionals and others about the disease. The site outlines CAD symptoms, the risks patients face, and data that highlight the disease’s seriousness.

In the United Kingdom, the nonprofit organization Same but Different is holding a calendar photography competition to raise awareness of CAD and other rare diseases. The organization uses the arts to bring these communities together.

Last updated: Sept. 10, 2020

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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.