I Just Received a CAD Diagnosis, Now What?

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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The process of getting a diagnosis for cold agglutinin disease (CAD) may be lengthy and frustrating. Often, multiple laboratory tests are required, and each negative test can make you feel like you’re constantly starting over when you’re trying to figure out what’s wrong.

Once you receive a CAD diagnosis, it can feel like you are isolated because the disease is so rare. This may especially be the case if your doctor is not familiar with CAD.

Here are a few tips to help anyone who has just been diagnosed with CAD.

Don’t panic after your diagnosis

Learn about your diagnosis. Find out what your treatment options are. Inquire about any additional tests you may need to confirm the diagnosis.

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

If you have primary CAD, there may be no known cause for your disease. While there is no cure for the chronic immune disorder, there are treatment options to help you manage its symptoms.

Develop a treatment plan following diagnosis

Talk with your doctor and healthcare team to develop a treatment plan. This includes finding out information about CAD and learning about the symptoms you experience and what to expect as the disease progresses. Your treatment plan should outline the therapies your doctor recommends. You also should be aware of additional therapies you may try if the initial treatments aren’t successful at managing your symptoms.

Plan for emergencies

CAD can cause medical emergencies when symptoms flare up because of cold exposure or other triggers. It is therefore important to have a plan for emergencies. Keep a copy of your treatment plan (or an abbreviated emergency plan) that lists the steps your doctor recommends that you take in the event of an emergency. Also, keep your doctor’s contact information at hand.

Connect with others

It’s easy to feel isolated when you receive a diagnosis of a rare disease. It can feel like you are burdening your friends and family by talking about your symptoms. It also can be challenging to make the lifestyle adjustments you need to implement to best manage your disease. However, it is important to maintain your social networks and build connections with others for your mental well-being.

Should you have trouble dealing mentally or emotionally with your diagnosis or having CAD, talk to your doctor about support groups and counseling options. If you are in a large city, you may be able to find a CAD or rare disease support group in your area. If not, there are many online support groups that can fill the gap.


Last updated: June 11, 2020


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 healthcare providers 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.