CDC's DES Update
Website with extensive, downloadable information for consumers and health care providers.
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.
NIEHS DES Study
This study, by the National Institute of Environmental Health Sciences, Epidemiology Branch, was conducted to pursue hypotheses about the non-cancer health effects of prenatal estrogen exposure.
NIEHS Public Interest Partners (PIP)
As a member of the National Institute of Environmental Health Sciences Public Interest Partners, DES Action participates monthly in discussions about environmental and health research with NIEHS staff members and representatives from other organizations. This site lists our colleagues, as well as the research priorities of PIP members and our work with the NIEHS.
The DES Cancer Network
The DES Cancer Network(DCN) is an organization that addresses the special needs of women who have had clear cell adenocarcinoma of the vagina and/or cervix – a cancer linked to exposure to DES before birth. The DES Cancer Network provides recovered patients ways to contact one another and supports new patients who have been diagnosed or are undergoing treatment. They also support the family and friends of DES daughters who are clear cell cancer survivors, as well as those who have lost loved ones to the disease, and they serve as a resource to health care professionals and attorneys who have patients/clients with clear cell cancer.
DES Cancer Registry
The University of Chicago’s international research registry specifically for women diagnosed with clear cell adenocarcinoma of the vagina or cervix. However, please check the site if you have been diagnosed with a reproductive cancer to see if it should be registered to help in DES research.
Shaping Our Legacy: Reproductive Health and the Environment
This report is a blueprint for understanding the known and suspected ill effects of chemicals on reproductive health and fertility. Exposure to endocrine disrupting chemicals occurs both environmentally or pharmaceutically. The harmful effects of DES exposure provided the first reason for studying impaired reproductive health. A chapter title in this booklet says it all – “DES: Harming multiple generations in multiple ways.”
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 members of the DES community, along with information about 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. The stories heal as they reveal. Ordering information is available at the web site for this wonderful book.
A Healthy Baby Girl
Judith Helfand's fascinating film about her DES experience with clear cell adenocarcinoma (CCA) is credited with being the first documentary to share the DES story with the general public.
DES Action Daughters On Line Support Group
This benefit of DES Action membership is for DES Daughters who can discuss common issues and share experiences via email. To join, send an email to DESactionDaughters-subscribe@yahoogroups.com. If you would like to participate but aren’t yet a DES Action member, go to Join/Donate.
DESupport_Parent
DES Support Parent of 3rd Generation Listserv
http://health.groups.yahoo.com/group/DESupport_parent/
This listserv is exclusively for parents of a DES Grandchild (i.e., a parent of a third generation diethylstilbestrol-exposed child). To join, go to the URL above and click "Join this Group".
DESupport_3rdgen
DES 3rd Generation Listserv
http://health.groups.yahoo.com/group/DESupport_3rdgen/
This listserv is exclusively for DES-Granddaughters and DES-Grandsons (i.e., persons who's mother or father were exposed to DES, diethylstilbestrol, in-utero).
To join, go to the URL above and click "Join this Group".
DES Support Northwest http://health.groups.yahoo.com/group/DESupport_NW/
This listserv is for DES-exposed persons living in Northwest (WA, OR, ID, AK and BC primarily). Family members, friends, and anyone interested in DES awareness in the NW are very welcome too! The purpose is to share information, plan activities, meetings, media events, legislative visits, etc. to promote DES Awareness and support DES-exposed persons. To join, go to the URL above and click "Join this Group."
DES Sons Research by Scott P. Kerlin, Ph.D.
Prenatal Exposure to Diethylstilbestrol (DES) in Males and Gender-Related Disorders: Results from a 5-year Study. Kerlin is dedicated to "lifting the veil of silence surrounding the full scope of adverse effects of prenatal DES exposure in males."
DES-Family listserv
For all DES-exposed and their family and friends to share support and information via e-mail. To join, send email to listserv@sact.com. In the body of the message write only the phrase "subscribe des-family" (without the quotes). You will receive a welcome letter back confirming your subscription.
National Women’s Health Network
Coalition of women’s health organizations that advocates for women’s health issues. The web site contains informative and accurate information, although not DES specific.
- Our Bodies Ourselves
Also known as the Boston Women's Health Collective, the OBOS online resource offers links to the book Our Bodies, Ourselves, which provides women with information about health, sexuality and reproduction.
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Breast Cancer Action
Do something besides worry: educate, agitate, organize around breast cancer issues
Our Stolen Future
This is an excellent website based on the book Our Stolen Future, by Theo Colborn, Dianne Dumanoski, and John Peterson Myers. Wide-ranging coverage of environmental health and endocrine disruptor research and issues.
Estrogen & Endocrine Disruptors
Many chemicals in the environment possess estrogenic, or endocrine-disruption features similar to DES. Researchers speculate those chemicals may contribute to an increase in reproductive problems and diseases in animals and humans.
Environmental Health News
Provides easy access to new research exploring environmental links to health.
Women's Health and the Environment
Information for making your home and neighborhood more environmentally friendly. Has tips for addressing environmental and health issues through information and advocacy.
RESOLVE
The national infertility association’s web site with news on treatments (not DES specific) and other family building options.
Organization of Parents Through Surrogacy (OPTS)
OPTS is a national, not-for profit, educational, networking and referral organization that supports infertile couples in building families through surrogate parenting and other assisted reproductive technologies.
Colposcopy Exam
You have been informed that your recent Pap test showed changes in the cells of your cervix and needs further study. This site defines the changes and possible courses of management. While informative for background information it is not DES-specific and treatment options suggested here might not be appropriate for DES Daughters.
FDA Letter of Feb. 22, 2011 concedes DES is a tragedy but refuses to apologize for it.
Federal Register, Sept. 13, 2000 in which the FDA withdraws approval of DES for use by humans. This is the FDA's way of banning a drug without actually calling it a ban. By withdrawing approval a drug cannot be prescribed even if it had been allowed earlier.
Congress Authorizes DES Research in 1992 (H.B. 4178) This is called the "DES Education and Research Amendments of 1992" and was signed into law by President George H.W. Bush.
DES Awareness Week 1985 Proclamation by President Ronald Reagan
Arthur Herbst, M.D., et al publish report in New England Journal of Medicine linking DES exposure before birth to a rare vaginal cancer in girls and young women - clear cell adenocarcinoma. Read the abstract of the article.
Here is a fascinating article and video clips from an April, 2011 interview with Dr. Arthur Herbst that came together at the University of Chicago thanks to the efforts of DES Action USA. We wanted to hear directly from the doctor who first linked DES exposure to cancer.
On the 40th anniversary (April 2011) of the connection being made between prenatal DES exposure and cancer, the New England Journal of Medicine has an interesting article about the discovery, and its aftermath.
Boston Globe article marks 40th anniversary of link being made between DES exposure and cancer.
Fortieth anniversary interview with Dr. Arthur Herbst in the DES Action VOICE newsletter.
DES Action VOICE newsletter review of an article in The New England Journal of Medicine commemorating the 40th anniversary the link between DES and cancer.
In a New York Times Letter to the Editor, DES Action calls on the FDA to require clearer warning labels for drugs given to pregnant women. Mothers-to-be should have all the facts to make an informed decision about taking a drug that could hurt their babies.
Photo of several DES Action USA Board members at dinner following successful Board of Director's meeting in May, 2011.
Those exposed to DES are highlighted as the "poster population" for what can happen when humans are exposed to endocrine disrupting chemicals (of which, DES is one). Redbook June 2011 article.
DES Mothers and Daughters are highlighted in this blog post on the Our Bodies Ourselves website. DES: A Story of Doctors Not Knowing Best was written by Susan Bell, from Bowdoin College. It describes the importance of DES activism on grassroots women's health activism.
An amazing and inspiring video of DES Daughter Susan Helmrich who lost many important body parts to cancer yet remains a world-class swimmer!
DES Daughters are at increased risk for uterine fibroids and while this study did not factor in DES exposure it shows that surgery for large fibroids can increase the possibility of a live birth after recurrent miscarriages.
Compiled in 2011 by the Office of Research on Women's Health this is a complete rundown of U.S. government DES studies through the years. An excellent resource!
October 22, 2011 France honors Anne Levadou, President, Reseau D.E.S., with the prestigious National Order of Merit. DES Action USA joins our activist colleagues in France and around the world in celebrating this well deserved recognition for a DES Mother who has dedicated her life to giving a voice to all the women and men exposed to DES.
Cancer Research Now: The DES Story, Lessons Learned - is a five minute video by National Cancer Institute DES Follow-up Study principal investigator Dr. Robert Hoover. (October, 2011)
FDA is working to update labeling rules for drugs prescribed to pregnant women. Questions and Answers on the Pregnacy and Lactation Labeling Rule.
DES Action USA Letter to Susan G. Komen for the Cure urging a reassessment to move DES exposure out of its "insufficient evidence of risk" category into one showing that DES is scientifically linked to an increased breast cancer risk for DES Daughters.
On Thursday, January 19, 2012 at the Federal Courthouse in Boston, US Magistrate Judge Marianne Bowler ordered 14 drug makers to negotiate settlements with 53 DES Daughters who claimed their breast cancers were linked to DES exposure. The drug companies wanted the case dismissed but had agreed ahead of time to mediate compensation packages if the judge agreed after pre-trial hearings to allow the case to continue. That is what she did but now there is talk of an appeal. What part of "we agree to negotiate" don't they understand? DES Action USA background information.
BLOGS
Many in the DES community are now writing blogs. Because they are personal tales based on life stories, and the knowledge-base of individual authors, DES Action does NOT endorse blogs for accuracy. However, they help share the DES experience while furthering understanding of the many consequences of DES exposure. Therefore, we list some interesting ones here:
Journal of a DES Daughter is written by a DES Daughter born in 1971 in France but now lives in the U.K. Her beautifully written and illustrated posts show the DES tragedy is truly international.
DES Daughter Network - is the "little sister" of the above blog but with a focus on social media and social networking. The blog features and displays the social media networks of existing DES groups and individuals who have an online social media presence aimed a raising DES awareness.
DES Daughter Carol Devine has an active blog about DES activism down-under. DES Exposure Australia: Personal and Consumer Aspects of DES exposure in Australia.
TELEVISION SHOWS
Lou Grant Show - you can now see the Lou Grant episode which aired in the early 1980s about DES. It is free on Hulu.
WCVB-TV News Segment about DES on this Boston ABC-TV affiliate's newsmagazine, Chonicle. Four minutes of TV worth watching!
WBNS-TV Columbus, OH (CBS) coverage of DES Breast Cancer litigation (10/10/2011)
WBNS-TV Columbus, OH (CBS) follows up with DES Breast Cancer litigatin ruling (1/22/12)
