Because Cowden syndrome can be complicated to diagnose, it is important to address all questions and concerns with your physician and genetic counselor. Remember that no two people with this diagnosis will experience the same journey. Pay particular attention to physical changes and discuss them with your physician regularly. Living with any type of genetic condition can be a challenge, but living with CS is a challenge you can face with a good medical team as your partner.

Remember that different people deal with this diagnosis 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 your feelings. The members of your health care team — physicians, genetic counselors, and nurses — serve as an excellent resource and you should discuss your situation with them. Another valuable resource can be other people who have been in similar situations. Support groups can connect people who are dealing with similar issues and bring them together in a supportive environment. Here are several groups that may benefit you or someone you know.

American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329
800-ACS-2345
www.cancer.org

IMPACC—a support group for people with intestinal polyposis and colorectal cancer
PO Box 11
Conyngham; PA 18219
717-788-1818

NSGC—National Society of Genetic Counselors
233 Canterbury Drive
Wallingford, PA 19086-6617
610-872-7608
www.nsgc.org

Genetic Alliance—genetic information and links to genetic counselors in your area
4301 Connecticut Avenue NW tt404
Washington, DC 20008-2304
800-336-GENE
www.geneticalliance.org

Patient run support group:
www.cowdenssyndrome.com
* This site is for personal support for individuals and families with Cowden syndrome and is not monitored by medical professionals.

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