How to Find Chronic Lymphocytic Leukemia-Specific Patient Support Groups

Joining a CLL support group can help you feel less alone and get advice on managing the condition. The CLL Society and the Leukemia and Lymphoma Society are two organizations that offer support groups for people with CLL.

Chronic lymphocytic leukemia (CLL) tends to progress very slowly, and many treatments are available to help manage the condition.

If you live with CLL, qualified health professionals can help you understand and weigh your treatment options. Other sources of support are also available to help you cope with the effects this condition may have on your life.

Read on to learn more about some of the resources that are available for people with CLL.

If you’re finding it difficult to manage the emotional or social effects of living with cancer, let your treatment team know. They may refer you to a mental health specialist or other sources of support.

You can also speak with a professional counselor through Cancer Care’s Hopeline. Their counselors can offer emotional support and help you find practical resources for managing your condition. To connect with this service, call 800-813-4673 or email [email protected].

It’s not just health insurance premiums, but also deductibles, that keep on rising. In 2018, the average deductible was $3,000 for a gold-tier family plan, $8,000 for a silver-tier family plan and $12,000 for a bronze-tier family plan, according to USC Annenberg’s Center for Health Journalism.

Some people also find it helpful to connect with other people who live with CLL.

A good place to start is the CLL Society. They currently offer about 40 CLL-specific support groups across the United States and Canada. Almost 3,000 CLL patients and caregivers meet virtually in these groups to share support, learn about CLL, and get the latest on CLL research and treatments.

Through the CLL Society, you can also register to attend patient education forums and other virtual events.

You can also find support through the Leukemia and Lymphoma Society (LLS). They offer a weekly live chat, “Living with Chronic Lymphocytic Leukemia,” which covers a variety of CLL-specific topics like making treatment decisions, managing side effects, and dealing with uncertainty.

The LLS also offers a peer-to-peer support program that connects you with someone who has gone through a similar experience as you and can offer support and advice. The peer volunteers are trained in counseling skills and are matched with patients based on factors like diagnosis, age, and gender.

You can also search for a family support group in your area through the LLS. They currently offer 130 support groups, and the number of groups continues to grow.

Other ways to find people who are affected by CLL include:

  • Ask your treatment team or community cancer center if they know about any support groups in your area.
  • Search the American Cancer Society (ACS) database for support groups.
  • Sign up for an online support group through Cancer Care.
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