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Articles and Related Website Links:
DES Resources and Support Groups:
Suggested Reading List
Video on DES:
Articles and Website Related Links:
DES History and Overview
Questions and Answers About DES
Women's Diagnostic Imaging Teaching
File Case Two - Diethylstilbestrol (DES) Exposure-2 diagnostic images of exposured uterus deformity
Infertility
Infertility tests and FAQs that may help DES Daughters stuggling with infertility
DES Exposure and Cancer
ARC KNOWN CARCINOGENS - DES
Diethylstilbestrol (DES) and Cancer: August 1995
Long Term Health Effects of Exposure to DES
DES Questions and Answers
NCI DES Follow-up Study Since 1992, the National Cancer Institute (NCI), in collaboration with research centers throughout the United States, has been conducting an ongoing study of more than 21,000 DES exposed Mothers, Daughters, and Sons. In 2000 the study was expanded to include a questionnaire for DES Granddaughters. This site has research reports about DES exposure which make fascinating reading.
Spotlight -- Health and Human Development Programs
EDC's project is part of a nationwide DES research and education program launched by the National Cancer Institute and the National Institutes of Child Health and Human Development in 1993.
State of the Research, DES Research Update 1999: Current Knowledge
Political Action on behalf of the DES Exposed: Stephanie from our DES-L. Read her testimony before the House Judiciary Committee.
DES Resources:
DES Action
DES Action USA is a national, non-profit consumer organization dedicated to informing the public about DES (diethylstilbestrol) and helping DES-exposed individuals. They publish a quarterly newsletter, The DES Action Voice, and many publications on various aspects of DES exposure. They also provide a link between DES-exposed people and researchers and the medical community.
DES Action Canada
DES Cancer Network
(DCN) is a national non-profit organization devoted to the support of DES-daughters with clear cell adenocarcinoma (CCA) of the vagina and/or cervix. They participate in national lobbying efforts and education, are involved in NIH funded research projects, hold an annual weekend meeting for CCA survivors and their families, and work closely with Dr. Arthur Herbst (who discovered the link between DES exposure and CCA and runs the National CCA Registry). They offer information, peer support, medical referrals, and a newsletter the DES Issues.
If you have been diagnosed with CCA, *please* contact DCN so you can be included in the registry. It's very important to be included for statistical purposes.
DES Cancer Network
514 10th Street NW, Suite 400
Washington, DC 20004-1403
Phone: 800-DES-NET4 or 202-628-6330
FAX: 202-628-6217
E-mail: desnetwrk@aol.com
DES Daughters Listserv and On-line Support Group
This Email discussion and on-line support group has been established to foster support, informationsharing and discussion among women who were exposed to DES.
news:alt.support.des
alt.support.des provides an open discussion for all exposed to DES. Information and research about DES exposure are shared. Members lend support to those suffering from its health consequences. Note: If you can't access alt.support.des, write to the news administrator of your server and ask them to add the alt.support.des newsgroup.
Suggested Reading
"Our Stolen Future" by Theo Colborn, Dianne Dumanoski, and John Peter Meyers. This controversial and groundbreaking book discusses how synthetic chemicals and toxins negatively affect the normal reproductive and developmental process...includes a foreword from Vice President Al Gore.
Transcript of an interview with author Dr. Theo Colborn about endocrine disrupters.
"DES Stories: Faces and Voices of People Exposed to Diethylstilbestrol" by Margaret Lee Braun with photographs by Nancy M. Stuart
DES Stories is the first book of photos and stories of DES daughters, mothers, and sons with DES history, research, and resources. In photographic portraits and interviews, DES daughters, mothers, and sons tell, in their own voice, what it's like to be DES-exposed; stories that heal as they reveal.
"Rose's Colors: A Mother's Journey," by Elizabeth Levine Wandelmaier
Rose's Colors is the inspiring, true story of how one family came to love and accept their child with multiple disabilities. Rose was born 8 weeks premature to Elizabeth, a DES daughter. Rose's cerebral palsy and other disabilities dramatically altered life for this family. Rose's Colors is the return to a challenging but good life. Elizabeth is former Co-Director of the DES Third Generation Network.
"My Year of Meats" by Ruth Ozeki
My Year of Meats is a wonderful, strong, disturbing, funny novel. It is at times hilarious and absurd, at times shocking and heart wrenching. Set in the early 1990's, the novel tells the story of two women, Jane and Akiko, interweaving their lives with Japanese and American culture, filmmaking, the beef industry, and DES. DES daughters will relate to Jane's fears and anger about DES, and many will recognize themselves in Jane's struggle with infertility.
Video on DES:
"A Healthy Baby Girl" is an incredible autobiographical documentary written/filmed and directed by Judith Helfand, a survivor of DES-related clear cell cancer. Judith is a board member of The DES Cancer Network and the film has been doing wonderfully - a the Sundance Film Festival, the Margaret Mead Film Festival, and others.
More info:
http://www.centerforsocialmedia.org/documents/healthybabygirl.pdf
Purchase Online ($34.95) or contact:
Women Make Movies
462 Broadway, Suite 500
New York, NY 10013
Tel: (212) 925-0606
Fax: (212) 925-2052
If you have questions or suggestions concerning the DES Daughters Listserv and On-Line Support Group, or if you are interested in contributing information, weblinks or articles to this site pertaining to DES exposure, please email the list moderator, Jenny: Owner-DES-l@surrogacy.org
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