American Anaplastology Association

Patient Support Information

The challenge of adjusting to a missing part of the face or body since birth or removed as a result of trauma or surgery can be emotionally debilitating. People are remarkably resilient and adapt amazingly well to treatment for facial and body differences, but it is recognized that this resilience relates not just to surgical or prosthetic treatment. The social and emotional side of treatment is just as important, and should not be neglected. Addressing the needs of the individual in adjusting to a facial or body difference can greatly assist in the recovery process.

It is important to seek emotional and moral support from family members, friends, support groups as well as professional help from psychologists, social workers, and other trained health care professionals. Since it is well understood that issues of loss, depression, anxiety, social phobia, and self-concept are a part of the overall problem, psychologists and social workers are often included on rehabilitation teams. They provide support for affected people in their relationships with their family, friends, and members of the health care team. They also help with the practical problems of navigating through the sometimes complicated health care system. This kind of help has a strong effect on the overall success of the surgical or prosthetic treatments.

The AAA has compiled the following listing of Support Network Groups, Informational Resources, and Recommended Reading that should be helpful for patients and their families.

Patient Support Network Groups

These are networks of individuals with common experiences and concerns for one another. Patient Support Network Groups tend to provide practical information to individuals and their families. Please contact the following groups for more information:

AboutFace USA
P.O. Box 969
Batavia, IL 60510
888-486-1209
Email:
Web site: www.aboutfaceusa.org
Provides resource directory, self-help network and consultations for people who have facial differences.

AboutFaceUSA is hosting The 2005 North American Craniofacial Family Conference with 2 or 3 days dedicated to individual patients and/or families. There will be lots of time for networking with others too. Individuals and families may register now and save $25 per registration through March 15, 2005. Please visit their website for more info on this first-ever format: www.aboutfaceusa.org/2005Conf.html

AboutFace International
123 Edward St., Suite 1003
Tornto, ON M5G 1E2 Canada
800-665-FACE
Email:
Web site: http://www.aboutfaceinternational.org

Caregiver Network
Web site: http://www.caregiver.on.ca/
Canadian-based, bulletin board, links, and support for caregivers.

Let’s Face It
P. O. Box 29972
Bellingham, WA 98228
(360) 676-7325
Email:
Web site: http://www.faceit.org
Provides resource directory, self-help network and consultations for people who have facial differences.

Support for People with Oral and Head & Neck Cancer
P. O. Box 53
Locust Valley, NY 11560-0053
516-759-5333
800-377-0928
Email:
Web site: http://www.spohnc.org
Patient run support group network providing group meetings, networking, newsletter and insurance information for oral, head and neck cancer survivors.

The Phoenix Society for Burn Survivors
2153 Wealthy Street SE #215
East Grand Rapids, Michigan 49506
(616) 458-2773
(616) 458-2831 Fax
(800) 888-BURN (2876)
Email:
Web site: http://www.phoenix-society.org/
Provides peer support and counseling to patients and their families under the guidance and approval of medical professionals. They publish a Monthly newsletter called the Icarus File.

OncoChat: Online Peer Support for Cancer Survivors, Families, and Friends
Web site: http://www.oncochat.org
Global support community for people whose lives have been touched by cancer.

Informational Resources

There are plenty of resources on the web for individuals seeking information on cancer, burn-related injury, and aging. The following is a list of some:

Administration on Aging
Web site: http://www.aoa.dhhs.gov
Information for older persons, families, practitioners, researchers, students, and the aging network.

Association of Cancer Online Resources
Web site: http://www.acor.org
A site designed to provide information of online resources for everyone affected by cancer and related disorders.

Burn Survivors Online
Web site: http://www.burnsurvivorsonline.com
Provide information and support for burn survivors and their families throughout the world.

Cancer Information Service of the National Cancer Institute
800-4-CANCER
Email:
Web site: http://www.cancernet.nci.nih.gov
Provides current, comprehensive information on all major types of cancer, treatments, and clinical trials, plus referrals to treatment facilities and doctors, via telephone, fax, on-line and print.

Caregiver Survival Resources
Web site: http://www.caregiver911.com
Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers. Founded in 1995, we produce Today’s Caregiver magazine, the first national magazine dedicated to caregivers, the “Sharing Wisdom Caregivers Conferences”, and our web site, caregiver.com which includes topic specific newsletters, online discussion lists, back issue articles of Today’s Caregiver magazine, chat rooms and an online store.

IRSC Internet Resource for Special Children
Web site: http://www.irsc.org
Dedicated to children with disabilities and other health care related disorders. Resource of Information and online community for family members, caregivers, friends, and educators.