Doctor Discussion Guide for Cold Agglutinin Disease Patients

If your doctor is knowledgeable about a rare disorder such as cold agglutinin disease (CAD), you should make the most of your visits, particularly in the weeks and months following your diagnosis.

Here is a guide to help you do just that.

About the disease

CAD is a rare autoimmune disorder in which exposure to cold temperatures (between 32 and 50 F; 0 and 10 C) causes autoantibodies, also called cold agglutinins, to bind tightly to red blood cells and cause them to disintegrate. This leads to anemia, among other disease symptoms.

About your appointment

Doctor visits can move very quickly, so preparation is key to a successful appointment. Make a list of your concerns beforehand so that they can be addressed in a single visit.

Also, keep all your medical records in a single place and take them with you. Your records should include your health insurance information and a list of your current medications, how often you take them, and at what dosages.

Before the appointment begins, ask your doctor whether you can use your phone or another device to record the visit. That frees you from taking copious notes, and guards against missing or incorrectly hearing important information.

Questions for your doctor

This list of issues and questions can help to guide you in ensuring constructive conversations with your physician or another member of your healthcare team. It also could help you establish an ongoing CAD treatment plan.

• I’m always fatigued. I’ve heard the main cause is something called hemolytic anemia. Is there a way to treat it?
• I’m concerned about possible heart involvement. If I do have heart issues, how would I know they’re caused by CAD? What are the treatments?
• How common is jaundice in CAD? How long does it last? Is there anything I can do to avoid it?
• What medicines can I take for joint pain? Is it progressive? How much does avoiding the cold help?
• Raynaud’s phenomenon became evident rather late in my life. Is that normal? How can I manage it? Would any medications help?
• Can I get vaccinations or immunizations? Can vaccinations cause CAD? What kind?
• What lifestyle changes can I make to overcome disease symptoms?
• How can I avoid the cold and warm up safely?
• What precautions should I take during hospital visits and medical procedures?
• Which blood tests should I have done regularly?
• Is it OK to exercise?
• How frequently should I see you?
• Are there things I can do to improve my overall health?

Last updated: June 18, 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.