U.S. Government Information Links
CDC’s DES Update
Website with extensive, downloadable information for consumers and health care providers. However, it has not been kept updated with the latest research on breast cancer, cardiovascular concerns and DES Grandchild issues.
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. Meet our two research heroes and get a solid understanding of how we came to know what we know about DES!
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.
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.
Office of Research on Women’s Health
In 2011 the ORWH compiled a complete rundown of U.S. government DES studies through the years.
DES Cancer Registry
The University of Chicago’s international research registry is specifically for women diagnosed with clear cell adenocarcinoma of the vagina or cervix. However, please check the site if you are a DES Daughter and have been diagnosed with a reproductive cancer to see if it should be registered to help in DES research.
U.S. Preventive Services Task Force is an independent, volunteer panel of national experts in prevention and evidence-based medicine. Each year the Task Force reports to Congress. The Task Force recommended Guidelines is what doctors refer to for interval and types of screenings for patients.
National Institutes of Health (NIH) National Cancer Institute (NCI)
American Cancer Society
Genetic and Rare Diseases Information Center
https://rarediseases.info.nih.gov/diseases/1859/diethylstilbestrol-syndrome The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
DES Archival and Women’s Health Network Research
The DES Action USA Archives and National Women’s Health Network Archives at Smith College International Women’s History Collection
Websites On Medical Issues, Endocrine Disruption and Environmental Health
(Also see Government Links – above)
MedShadow – This website is full of information about health issues, with an emphasis on side effects from drugs and other medical interventions.
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 information about women’s health, sexuality and reproduction. The chapter on DES was written by DES Action staff.
Environmental Health News – Provides a daily rundown of national and international environmental health news for easy access to current research exploring environmental links to disease.
Our Stolen Future – Offers wide-ranging coverage of environmental health and endocrine disruptor research, and regulatory issues.
Health Organizations – But Not DES Specific
Breast Cancer Action – Believes in doing more than just worrying. This site is the go to location to find individuals who educate, agitate and organize to support breast cancer prevention.
National Women’s Health Network – This coalition of women’s health organizations, and individuals, advocates for women having access to the health care they need.
Silent Spring Institute – Works to identify and break the links between environmental chemicals and women’s health – with a focus on breast cancer.
Disability Benefits Help – an independent organization dedicated to helping people of all ages receive Social Security disability benefits. They help answer questions on how to qualify for disability with cervical cancer diagnosis.
History Worth Remembering – 1971 – 2011
40 Years After The Link Was Made Between DES And Cancer
April 22, 1971 New England Journal of Medicine article by Arthur Herbst, M.D. et al, breaks the news that DES prescribed during pregnancy could pass through the placenta and cause adult onset disease in the offspring.
How a 40 Year Old Discovery Changed Medical Thinking – This is an article, with video clips from Dr. Arthur Herbst, who shares first hand details about the medical finding and it’s impact.
DES Was Linked to Cancer 40 Years Ago – This article ran in the DES Action VOICE newsletter with information of special interest to the DES community.
Government Actions Through The Years
DES Awareness Week 1985 Proclamation by President Ronald Reagan, who declared the week of April 21 – 27, 1985 as DES Awareness Week.
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. After years of pressure calling for government funding of DES research this important legislation provides it.
Federal Register, Sept. 13, 2000 in which the FDA withdrew 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 previously.
FDA Letter of Feb. 22, 2011 to Senator John Kerry conceded the DES experience is a tragedy but refused to issue an official apology for its part.
Blogs and Blog Posts
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.
A DES Daughter’s Blog – 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 Exposure Australia: Personal and consumer aspects of DES exposure in Australia, written by a DES Daughter.
DES: A Story of Doctors Not Knowing Best – DES Mothers and Daughters are highlighted in this blog post on the Our Bodies Ourselves website. It was written by Susan Bell, from Bowdoin College, and describes the importance of DES advocacy on grassroots women’s health activism.
The Pump Handle, a respected public health blog zeroes in on the DES experience in a post titled: Public Health Classic: DES Daughters.
Videos and Music
Lou Grant Show – you can now see the Lou Grant episode about DES, titled “Inheritance,” which aired on CBS-TV in the early 1980s. It is free on Hulu or here on YouTube: https://www.youtube.com/watch?v=0I_LN1sdbI4
A Healthy Baby Girl – First aired in 1997 (on PBS-TV). This emotional video shared the raw emotions of how Judith Helfand and her family struggled through her diagnosis of, and treatment for DES cancer – and how it turned her to a life of activism. This was the first documentary to bring national attention to the DES issue. It is available now on iTunes if you haven’t seen it, or wish to watch it again.
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). Dr. Hoover describes the history behind DES and the long-term health effects now known to be associated with prenatal exposure to the drug.
DES Song 2014 – Hear the haunting song created by a DES Grandson using a poem by his mother, a DES Action USA member. “Is the money well worth the damage you’ve done? . . . Think the next time you’re out playing golf, cruising your beamer, or riding your horse, all of your money and ill-gotten gain came at a great price, DES is the name.”
DES Action DES Daughters On Line Support Group
This group is a benefit of DES Action membership. If you would like to participate but aren’t yet a DES Action member go to our Join/Donate page. Listserv participants discuss common issues, experiences and suggestions in a supportive and caring group by way of email messages. Once you are a member of DES Action, please email info@DESAction.org and request membership to the DES Daughters On Line Support Group.
DES Action DES Men’s Online Support Group (For DES Sons and DES Grandsons)
This group is a benefit of DES Action membership. If you would like to participate, but aren’t yet a DES Action member go to our Join/Donate page. Listserv participants discuss common issues, experiences and suggestions in a supportive and caring group by way of email messages. Once you are a member of DES Action, please email info@DESAction.org and request membership to the DES Men’s On Line Support Group.