Online Resources

 

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. Here is more on the NCI DES Follow-up Study itself. Meet our two research heroes and get a solid understanding of how we came to know what we know about DES!

LINKAGE – NCI DES Follow-up Study History
A history of NCI DES research is featured in the March 2012 issue of the NCI’s in-house publication. Meet two DES research heroes and learn how their work impacted what is known today about DES exposure.

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 Partners
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. This website is being updated and will be back online shortly.

 

Websites On Medical Issues, Endocrine Disruption and Environmental Health
(Also see Government Links  – above)

DES Action Australia – website of Australian national support and advocacy group for people exposed to the synthetic oestrogen DES, and related hormones.

DES Centrum – website to share information (in Dutch) for the DES-exposed in The Netherlands.

Reseau DES France – website (in French) for the DES community of DES exposed individuals in France.

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.

The Collaborative on Health and the Environment (CHE) – The primary mission is to strengthen the science dialogue on environmental factors impacting human health and facilitate collaborative, prevention-oriented efforts to address environmental health concerns.

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.

Association for Children Damaged by Hormone Pregnancy Tests – British organization aimed at proving the drug Primodos caused harm and seeking justice for victims.

 

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.

 

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.

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 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.

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.”

 

Listserv Options

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.

 

DES Support Parent of 3rd Generation Listserv Group
https://groups.yahoo.com/neo/groups/DESupport_parent

This listserv is exclusively for parents of a 3rd generation diethylstilbestrol (DES) exposed child (i.e., a parent of a DES-granddaguther or DES-grandson). To join, go to the URL above and click “Join this Group”.

 

DES Support  3rd Generation Listserv
https://groups.yahoo.com/neo/groups/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”.

 

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