Living with a rare disorder like cold agglutinin disease (CAD) can be challenging. It can be hard to find information about the disease, or doctors who specialize in treating it.
It is, therefore, common for people with CAD to feel isolated. Some may find it difficult to talk to friends or family who don’t know what they are going through.
Why join a support group?
It can be helpful to talk to people who are living with the same disease that you are — people to whom you don’t have to explain your illness. Support groups also can be a great resource for finding out about different treatment options. Many patients find that joining a support group gives them a sense of community and belonging.
Non-profit advocacy groups like the American Autoimmune Related Disease Association can be a great resource for finding a doctor experienced in treating people with CAD, learning about new treatments being developed, and connecting with other patients.
This type of group also advocates for patients, raising awareness and educating the general public about the disease.
Moreover, joining advocacy groups can be a good way of finding information about clinical trials and connecting patients with study organizers.
How do I find a support group?
Ask your doctor and your treatment center whether they know of any support groups. Check with your town or city to see if there are any local groups in your area. If you are part of a religious organization, they also may have resources available or be able to point you toward a support group.
On social media sites like Facebook or Yahoo! Groups, there are groups that patients can join to chat and share news and tips.
The Cold Agglutinin Disease (CAD) Support Site is a patient-run organization for CAD news and information.
I can’t find a support group, what next?
If you can’t find a support group in your area that suits your needs, it might be an option to start one yourself. There are many resources, both online and through local organizations, to help you build a new support group.
Last updated: Oct. 15, 2019
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.