Because mesothelioma is so rare, it is hard to find people near you who understand what it’s like to suffer from such an aggressive condition. Fortunately, there are places and websites in which you can partake to meet other veterans who share your experience.
Mesothelioma Support Groups
Support groups are generally non-profit and have connections to top mesothelioma specialists and researchers. There are mesothelioma support groups for patients who have mesothelioma as well as for their families.
How Can Mesothelioma Support Groups Help?
Mesothelioma support groups can be extremely helpful to patients and families dealing with this disease. By joining a mesothelioma support group, you can get the following:
- Empathetic support. You can talk with other patients and family members who know exactly what you are going through at every stage of the disease. This can be invaluable when you feel lonely and don’t know who to talk to about your condition.
- Sense of relief. Just by knowing others who have survived and are continuing to live their lives with the disease of mesothelioma, you can experience a peace of mind. You will learn that you and your family aren’t alone in your struggles with this disease.
- Access to clinical trials. By meeting others who have the disease, you may hear about the latest treatments and clinical trials that are being conducted throughout the country. This can be invaluable when dealing with a rare disease.
- Common bonds. Friendships and relationships can be borne out of adversity. Getting continued support during hardship can help create bonds that can’t be made with people who do not understand your experience.
- The opportunity to help others. It can be gratifying to know that you can help others by sharing your experience with mesothelioma. This sharing is vital for making and keeping lifelong relationships with those who truly understand you and can learn from you.
- Stress reduction. Hearing from others and forging a sense of camaraderie with those who have survived similar treatments may help reduce stress. You can learn from those who know what you’re going through.
- Get a sense of community. Support groups are small communities of people who share an important common thread. Whether they live near you or thousands of miles away, there is a sense of shared experience and community that can be incredibly helpful to those who suffer from this rare condition.
- Learn about treatments for mesothelioma. Everyone has their own unique treatment plan for their mesothelioma. By joining a support group, you can see what different treatment choices exist and how others have responded to having the various kinds of treatments.
- Pain reduction. Research tells us that those who participate in support groups have a decreased level of pain when compared to those who are trying to deal with mesothelioma on their own.
Mesothelioma support groups can be helpful to families of mesothelioma victims as well. Family members are going through their own pain and difficulties. Through these groups, families can get the support and education they need.
Foundations for Mesothelioma Support
There are several major foundations that offer support for mesothelioma patients and their families. Some of these include:
- The Meso Foundation. This is a non-profit foundation consisting of patients, physicians, mesothelioma advocates, family members and researchers who have committed themselves to finding a cure for mesothelioma.
- International Mesothelioma Interest Group (IMIG). This is a group of mesothelioma scientists who are working toward a cure for mesothelioma through research and disease management.
- Canadian Mesothelioma Foundation. This is a non-profit organization that offers invitation-only support online to caregivers, patients, and family members of living and deceased mesothelioma patients.
Support Groups You Can Join
Finding a support group can be empowering to patients with mesothelioma who don’t want to feel so alone. By joining a support group, you can get the encouragement you need to get through the treatments for mesothelioma necessary for survival. Support groups contain a variety of patients who consider themselves survivors, along with those who care for mesothelioma patients and patients currently undergoing treatment. These are some support groups for you to consider joining:
- Brigham and Women’s Hospital Mesothelioma Orientation Group. This is an in-person support group for veterans and others who have just been diagnosed with mesothelioma. Information on the disease is given by Dr. Sugarbaker, social workers, chaplain staff, and researchers. Call 617-732-5500 for more information.
- Mesothelioma Support Group for Family Members. This is also at Brigham and Women’s Hospital and is for family members dealing with a loved one who has mesothelioma. It’s led by social workers and chaplain staff and focuses on those issues important to caregivers. Call 617-732-5500 for more information.
- Mesothelioma Foundation Phone Support Groups. These are good support groups for people who live far from top mesothelioma centers and who are still in need of support. Call 703-879-3819 for more information.
- Cancer Support Helpline. This is a general helpline for those who have cancer. Call 1-888-793-9355 for more information.
Online Support Groups
The internet can be a place to meet and get support from people all over the country who are dealing with the same issues that you are. Online mesothelioma support groups include:
- Mesothelioma Guide Facebook Group.This is an open group that is managed by the makers of the Mesothelioma Guide. It provides information about research and other areas of mesothelioma care and treatment.
- Mesothelioma Foundation Facebook Group.This is a Facebook-based group for people and their families dealing with mesothelioma.
- MD Junction.This is a large site containing more than 800 support groups for people who have various health problems, including cancer and mesothelioma.
- Cancer Support Community. This is a place where you can find other mesothelioma patients with whom you can share your experiences online.
- Daily Strength. This is a site that offers a mesothelioma support group providing information and sharing among people with the disease.
- Share the Care.Information about mesothelioma and its management are given by this support group for mesothelioma patients and family members.
- CanCare Cancer Support.If you have a loved one who has been diagnosed with cancer and you need someone to talk to or need practical advice, CanCare can connect you with a family member of a cancer survivor.