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
This web site for Judith Helfand's fascinating film about her DES experiences has plenty of information for the DES community.
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-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.
This I Believe About DES
National media project, This I Believe, collects essays about core values. National Public Radio (NPR) airs selected essays on Monday mornings. DES Action member Caitlin contributed one, which is now available in the on line database. Essays are still being collected, so Caitlin suggests those with a penchant for writing can submit thoughts about living with DES.
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:
Mary Katherine Kennedy is a DES Daughter who writes about turning to infertility treatments in her quest to have a second biological child.
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.
