If you or someone you love lives with desmoid tumors, it can feel lonely. After all, these tumors are so rare that you probably don’t know anyone else who has one.

Sometimes, this might not bother you at all. Other times, you might want to talk to someone who understands. If you’d like to find a support group where you can talk about desmoid tumors and how they affect your life, here’s what you need to know.

What Are the Benefits of Joining a Desmoid Tumor Support Group?

A support group helps people with similar experiences connect with each other. This could be about something that happened in the past or something happening right now. A support group for desmoid tumors offers you the chance to talk with others who have the same diagnosis.

Joining a support group can improve your quality of life in many ways. Here are some ways you may benefit from a desmoid tumor support group.

Emotional Support

Some people find they need extra emotional support after being diagnosed with desmoid tumors. Oncologists and medical staff are an essential part of your care, but offering emotional support isn’t their main role. Your family and friends may surround you with love, but they might not fully understand what you need. People who have lived with desmoid tumors or other rare diseases can offer different kinds of help because they understand what you’re going through.

Support groups have been shown to lower depression and anxiety while improving overall well-being. When people understand you, it can help you feel better about your life and your current situation.

Better Self-Care

Taking care of yourself after a desmoid tumor diagnosis is important. Members of your support group may have advice on how to balance self-care with medical treatment, work, family obligations, and other aspects of daily life. Learning from your peers can help you lower your stress levels and find new ways to cope with the fatigue that often comes with a difficult diagnosis and desmoid tumor treatment.

Increased Education

A support group can be a great way to learn more about desmoid tumors. Members can also help you understand what to expect from different treatment options. They can share their experiences with particular doctors or medical centers and suggest other resources that may help you on your journey. These are practical tips that only people who have been through a desmoid tumor diagnosis themselves would know.

Improved Outlook

It can be hard to feel hopeful after a desmoid tumor diagnosis. You might feel like your life is entirely out of your control, which is hard. Being part of a support group can help. When you make good choices about the things you can control, you may find that you feel better about your life and your diagnosis overall.

Ways To Find a Desmoid Tumor Support Group

There are several ways to find desmoid tumor support groups. If one option doesn’t work for you, try another until you find the right group for you.

1. Find Groups Through Desmoid Tumor Organizations

Some desmoid tumor organizations may offer support groups in your area. The Desmoid Tumor Research Foundation (DTRF) has a search tool that allows you to search for groups near you or in your language. The Desmoid Project also runs support groups and organizes a desmoid tumor patient retreat.

2. Search for Rare Disease Support Groups

If you can’t find an in-person desmoid tumor support group in your area, consider joining a support group for people with various rare diseases. Many organizations support those with rare conditions. For example, Global Genes offers a concierge service to connect you with mental health specialists and other resources in your area. Other advocacy groups, like the EveryLife Foundation and the National Organization for Rare Disorders (NORD), run events and conferences to advocate for research and better health care for people with rare diseases.

3. Consider Sarcoma Support Groups

Desmoid tumors are related to soft tissue sarcomas, which are cancerous tumors in soft tissues. For this reason, a sarcoma support group may offer the support you need. You can find these groups through the Sarcoma Alliance or the Liddy Shriver Sarcoma Initiative. If you prefer one-on-one support or would like a mentor instead of a whole group, reach out to the Imerman Angels.

4. Talk to a Doctor or Social Worker in Your Network

If you’re looking for a local support group, see if your oncology team, other health care providers, or a social worker on your health care team can help. They are likely to know about groups that meet at your local hospital or cancer center, which may not be advertised online. These groups can connect you with people nearby who may offer different kinds of support than those who live farther away.

5. Consider an Online Support Group

Some of the groups mentioned above meet online. You can also engage with platforms like MyDesmoidTumorTeam or Smart Patients. These allow you to post and participate from anywhere, whether you’re at the cancer center, in the hospital, or in your own bed. If treatments limit your mobility, you don’t have to worry about losing support.

Talk With Others Who Understand

MyDesmoidTumorTeam is the social network for people with desmoid tumors and their loved ones. On MyDesmoidTumorTeam, members come together to ask questions, give advice, and share their stories with others who understand life with desmoid tumors.

Have you found a support group for desmoid tumors, or are you still looking? Share your experience in the comments below, or start a conversation by posting on your Activities page.