Planning for the Future When You Have Cold Agglutinin Disease

Patients with cold agglutinin disease (CAD) usually receive their diagnosis later in life, the median age being 76. If you have the disease, you may feel as if it struck out of the blue. Here are some things you can do to help plan for the future.

Gather support

Because you can’t predict how your health will fare down the road or who might be around to support you in the future, it’s prudent to get your team in place. Beyond a spouse or child, perhaps an extended family member, or even a friend, could be a resource.

It’s also a good idea to plug into CAD support groups to talk with people who are living with the same disease as you.

Reassess where you live

It may make sense to move closer to family or others who can help support you, if possible, particularly if they live in a warm climate.

An association between low ambient temperatures and worsening hemolysis has been documented in some patients. While the beneficial effect of keeping warm is largely based on clinical data, most scientists recommend patients adhere to existing recommendations on protecting against cold exposure.

Plan your home environment

If you plan to remain in your home in the future, make sure it isn’t drafty and that spaces where you spend most of your time are sunny or, if necessary, equipped with space heaters. A cozy fireplace would likely work, too.

Assess your finances

Managing personal finances can be challenging for anyone. People who live with a chronic illness often experience a unique set of financial challenges. A diagnosis may even mean reassessing priorities. Consider getting professional help, making sure you share your health status with your financial advisor so it can be factored into long-term planning.

Plan to engage with others

When you have a chronic disease such as primary CAD, heart issues or hemolytic flare-ups can make it seem futile to make plans. Still, it’s important for your quality of life to continue to engage with family and friends, as long as you’re flexible and following your doctor’s instructions.

If you are diagnosed with secondary CAD, which is usually caused by an infection, symptoms may resolve when the infection is treated.

Help raise awareness

You and your family may also consider getting involved in efforts to raise awareness of the disease, which affects about one in 80,000 people.

Like many other rare diseases, CAD remains an under-diagnosed or misdiagnosed condition that is often misunderstood. According to one study in Denmark, 13 CAD cases were recorded in 1970 among 4.93 million residents at the time. More recent estimates suggest a prevalence of 12 to 16 cases per million residents.

Most physicians and other healthcare professionals have little knowledge about 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 person receives a CAD diagnosis, the sooner treatment can begin. This can help maintain or improve the patient’s quality of life in the future. Greater awareness also tends to bring more research support, potentially leading to new and better therapies, and possibly a cure for CAD in the future.

Join a patient registry

Relatively little information is available about the trajectory, diagnosis, and long-term impact of CAD. To advance disease knowledge and better support patients around the world, Sanofi Genzyme has launched the CADENCE (Cold Agglutinin Disease Real World EvidENCE) Registry.

The registry will follow patients in the real world, gather their historical data, and track their disease-related characteristics and complications. If you wish to enroll and need more information, send an email to [email protected].

Last updated: Sept. 24, 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.