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Mesothelioma Support Resources

Because mesothelioma is so rare, it is hard to find people near you who are suffering from the disease and who understand what it’s like to suffer from such an aggressive condition. Fortunately, there are places and websites you can partake in so you can meet other veterans who suffer from mesothelioma.

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 support groups for their families.  There are even support groups for families who have survived the death of a loved one because of mesothelioma.

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 ongoing 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 ongoing support around your troubles can help create bonds that can’t be made with people who do not understand what you are going through.
  • The opportunity to help others.  It can be gratifying to know that you can help others by sharing your experiences with mesothelioma.  This shared experience is vital for making and keeping lifelong relationships with those who truly understand you and can learn from you.
  • Stress reduction.  You can relieve a lot of your stress around having this disease by hearing others who have survived the treatments you are currently undergoing.  You can learn from those who know what going through mesothelioma is like.  This camaraderie can reduce your personal level of stress.
  • Get a sense of community.  Support groups are small communities of people who share an important thing in common.  Whether they live near you or thousands of miles away, there is a sense of shared experiences and community that can be so 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 done after 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 by having a person with mesothelioma in their family.  Through support groups, the family can get the support they need and can learn for themselves about mesothelioma stages, cell types and treatments, among other things.

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, finding cures and managing treatment of the disease.
  • Canadian Mesothelioma Foundation. This is a non-profit organization that offers online support groups by invitation only 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 with the disease.  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 ongoing patients going through treatments at the present time.  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 is led by social workers and chaplain staff and focuses on those issues important to caregivers. Call 617-732-5500 for more information on this group.
  • 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 on these groups.
  • Cancer Support Helpline. This is a general helpline for those who have cancer.  You can contact the helpline for more information on support you can receive by calling 1-888-793-9355.

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 kinds of health problems, including cancer and mesothelioma.
  • Cancer Support Community.  This is a place where you can find other mesothelioma patients to share your experiences with 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.

Additional Resources

Sources & Author Edited: August 31, 2015

About the Writer

Retired LCDR Carl Jewett

LCDR Carl Jewett is a retired Naval Officer, having served just under 24 years in the submarine force. He currently serves as a VA Accredited Claims Agent and as the Executive Director of the Veterans Assistance Network. He specializes in assisting veterans filing VA claims for asbestos-related disabilities such as mesothelioma and asbestos-related lung cancer.

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