Juvenile Polyposis:
A Guide for patients and their families
Support Groups and Resources
Joy Larsen Haidle, MS, CGC, UI Health Care
V. Kim Horton, RN, MS, CGC, UI Health Care
James R. Howe, MD, UI College of Medicine
Hope Bergemann, UI Health Care
Peer Review Status: Internally reviewed by the
authors
First Published:
Last Revised: April 2002
Living with any type of genetic condition can be a challenge, but living with JP is a challenge you can face with a good medical team as your partner. Keep in mind that no two people with this diagnosis will experience the same journey. Pay particular attention to any physical signs or symptoms that you experience and make sure to discuss them with your physician regularly. Remember that different people deal with this diagnosis and the challenges it brings in different ways. For some the path may be long and difficult while others adjust in a shorter time with less difficulty. Just remember to give yourself time to acknowledge the feelings you are having. The members of your health care team—physicians, genetic counselors, and nurses—may serve as excellent resources and you should feel free to discuss your situation with them. Other people who have JP can be valuable resources as well. Support groups can connect people who are dealing with similar issues and bring them together in a supportive environment. Here is a short list of several groups that may benefit you or someone you know.
American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329
800-ACS-2345
http://www.cancer.orgIMPACC—a support group for people with intestinal polyposis and colorectal cancer
PO Box 11
Conyngham, PA 18219
717-788-1818NSGC—National Society of Genetic Counselors
233 Canterbury Drive
Wallingford, PA 19086-6617
610-872-7608
http://www.nsgc.orgGenetic Alliance—genetic information and links to genetic counselors in your area
4301 Connecticut Avenue NW #404
Washington, DC 20008-2304
800-336-GENE
http://www.geneticalliance.orgThe Johns Hopkins Site for Colon Cancer:
http://www.hopkinskimmelcancercenter.org/CANCERTYPES/colon-rectal-cancer.cfm?CANCERID=78
* A great resource for understanding colon cancer and related issues.
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