Support programs exist in a variety of formats. Some groups are formal and focus on learning about diseases such as mesothelioma or other asbestos cancers; others deal mainly with feelings. Many groups are informal and social.
Some groups are composed only of asbestos or cancer victims while others include family members or friends. Some are led by professionals, although most are self–help groups led by patients. Whatever the format, a support group can help its members explore the fears and problems posed by severe diseases.
Finding an Asbestos Support Group
Doctors, nurses, or hospital social workers often will have information about local cancer and asbestosis support groups, including location, size, type, and how often they meet. Many newspapers carry a special health supplement containing information about where to find such groups.
A medical center that treats occupational diseases often has support groups specifically geared for patients with asbestosis, mesothelioma, or asbestos lung cancer. You may also find groups through your union or workplace.
These organizations are a source for asbestos support groups:
Alliance for Lung Cancer Advocacy, Support & Education (ALCASE) ALCASE also has a Phone Buddies Program that matches lung cancer survivors with similar experiences as well as family members of lung cancer patients. You can reach ALCASE at 800–298–2436. American Cancer Society Find out about events, news, resources, volunteer opportunities and more in your community. Asbestos Disease Awareness Organization (ADAO) Provides online support groups for patients with asbestos-related disease and their families. Asbestos Victims of America Provides medical, legal, and emotional counseling to asbestos victims and their families. You may reach the group by email or by calling 831–440–0282. Gilda’s Club A nonprofit organization that provides support and networking groups, lectures, workshops and social events for cancer patients. It has affiliates nationwide. National Cancer Institute Call 1–800–4–CANCER (1–800–422–6237) and ask for the Cancer Information Specialist who will have resources about support groups in various locations. Wellness Community Offers drop–in and ongoing support groups and networking groups for specific types of cancer. White Lung Association Consults with victims of asbestos exposure, school boards, and others interested in identifying asbestos hazards. May be able to connect you to asbestos groups in your area.
Books for Your Asbestos Support Group
The books below can provide topics and inspiration to your support group. One is about how to start a support group:
Share the Care: How to Organize a Group for Someone Who is Seriously Ill Cappy Capossela and Shelia Warnock, Simon and Schuster, 1995.
A Cancer Survivor’s Almanac: Charting Your Journey Edited by Barbara Hoffman, JD. National Coalition for Cancer Survivorship. Chronimed Publishing, 1996.
There are many other books about living with chronic disease. Check with your library and bookstores for more titles.