Patient Support

 

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 IAA 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. 

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 - Information for older persons, families, practitioners, researchers, students, and the aging network.
  • Association of Cancer Online Resources - A site designed to provide information of online resources for everyone affected by cancer and related disorders.
  • Burn Survivor Resource Center - Provides information and support for burn survivors and their families throughout the world.
  • Cancer Information Service of the National Cancer Institute 800-4-CANCER Email: cancernet@icicc.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 - Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers. Founded in 1995, they produce Today's Caregiver magazine, the first national magazine dedicated to caregivers, the Sharing Wisdom Caregivers Conferences and their web site which includes topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver magazine, chat rooms and an online store.

Recommended Reading 

There are several journal articles and books that may be of interest to our patients. The following is a list of some:

  • A Singular View: The Art of Seeing with One Eye by Frank Brady Available online at http://www.asingularview.com
  • After Plastic Surgery, Adaptation and Adjustment by Frances Cooke Macgregor Journal article available in medical libraries.
  • Emotional Care of the Facially Burned and Disfigured by Norman R. Bernstein
  • Face Value: Coping with Facial Disfigurement by Linda R. Shafritz ISBN 0-9646774-0-7
  • Earless by Tyler Menssen. Tyler Menssen, a student at Minnesota State University, Mankato, has overcome the trials and tribulations of being born with Goldenhar Syndrome to become a model student, volunteer, worker, and now published author. In this memoir, Tyler shares many situations he has encountered while being born with Goldenhar Syndrome and goes in depth with his thoughts and feelings on subjects ranging from high school and college classrooms to what it might be like to spend a day as his ears, if they were real of course.