Developing Your Treatment Plan When You Have Cold Agglutinin Disease

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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Managing a rare disorder such as cold agglutinin disease (CAD) can be challenging. Because the disease is so rare, it can be difficult, especially in emergency situations, to get the treatment you need as many healthcare professionals may be unfamiliar with the disease.

Developing a treatment plan and updating it frequently can help ensure you get the best care possible.

What is a treatment plan?

A treatment plan contains a description of your disease, along with a list of the symptoms that you currently experience, and a separate one containing information about common symptoms.

The plan should also contain information about how the disease is being treated, including your prescribed treatments with dosages and potential side effects.

If you take vitamin supplements or are on a special diet, that information should also be included in the treatment plan.

List the contact information of your primary care physician on your treatment plan in case of an emergency. You can hand the treatment plan to emergency room personnel, so that they can contact the physician who’s most familiar with your treatment plan.

Who should have a copy of your treatment plan?

If you are in school, the school nurse or clinic should be made aware of your condition and have a copy of your treatment plan so that they are prepared to treat you if necessary.

Give a copy of your treatment plan to your workplace representatives and inform them about your emergency contact.

Another copy should go to your health care proxy, a legally designated person who can make medical decisions for you in the event that you are unable to make those decisions yourself.

How frequently should a treatment plan be updated?

Every time you meet with your physician, review your treatment plan and see what needs updating. Are there new medications that you need to be taking? Are there new recommendations? Are you going to try a new treatment?

It’s good practice to give a copy of your updated treatment plan to anyone with a prior copy so that they are kept informed. If you have a health care proxy, make sure to discuss any changes with them after every update to your treatment.


Last updated: Feb. 27, 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 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.