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DES Action Publications

DES Action publishes a newsletter twice a year for its members and other targeted groups and individuals. There is an information leaflet available which is funded and produced by the Health Promotion Unit of the Department of Health and posters from the same source. A detailed booklet for confirmed DES daughters is available on request. Audited annual accounts are also available

Newsletter - Summer 2002

New Research Raises Concerns about Third Generation Impact of DES Exposure
by Fran Howell, Board of Directors, DES Action USA
Reproduced from VOICE by permission of DES Action USA

Results of a new study should give pause to those who have been exposed to DES, and to researchers who are studying its effects.

The findings, published in the March 30, 2002 edition of the prestigious British Medical journal The Lancet show that male children of women exposed prenatally to DES have a greater risk for the birth defect hypospadias than the general population.

While studies in mice have indicated the possibility of problems for children of DES daughters, this is the first evidence we have of human transgenerational effects of DES exposure on the so-called "third-generation."

The study was done by the Netherlands Cancer Institute. After learning of higher than normal rates of hypospadias reported by the Netherlands DES Information Centre, scientists at the Cancer Institute decided to conduct a larger study.

When the researcher Dr. Flora van Leeuwen and her team examined birth records of more than 8,000 boys born through fertility centers, they found a DES connection. The results: among 8,729 boys whose mothers were not exposed to DES, 8 cases of hypospadias were reported. For the 205 mothers prenatally exposed to DES, there were 4 cases of hypospadias. The findings represent a more than 20-fold increased risk for the DES-exposed group.

Hypospadias is a benign (non-cancerous) birth defect in which the urethral opening on the penis is in the wrong place. This quote from Sandra Steingraber's book Having Faith explains hypospadias more thoroughly. "Like neural tube defects, hypospadias happens when a strip of flat tissue fails to roll up to form a closed tube. In this case, the tube is the male urethra, which runs down the middle of the penis and so connects the bladder to the outside world. If the urethral tube does not fuse completely, the external opening will emerge somewhere along the shaft of the penis instead of at the tip.... Many such anomalies are reparable with surgery."

Leaders of DES Action are urging more research. As Programme Director and Founder Pat Cody states, "What we don't know is why there is more hypospadias in sons of DES daughters. Researchers must look into it. DES Action is calling for more studies to determine how and why this third generation effect is occurring," Cody says. "We also question whether DES is affecting third generation sons and daughters in other ways too. We hope this study finally draws attention to the urgent need for more research."

One area of interest to scientists is the impact of chemicals in our environment. DES is similar to other chemicals known as endocrine disruptors, so if exposure can harm not only one generation, but others to come, then the results of this study may have broad implications which reach far beyond the DES-exposed population.

"Investigations into how DES affects people, and their families through generations may ultimately unlock all sorts of environmental mysteries," says Cody. "If problems for the DES population aren't enough to interest scientists, the huge ramifications of environmental toxins should do it."

The best place to start is the National Cancer Institute. The NCI has identified known DES exposed women and men, along with a control group.

According to Cody, "this is an opportunity that shouldn't go to waste. We urge the NCI to increase funding for this important research into potential effects of DES exposure on our third generation of boys and girls. By so doing, we could learn more about how the chemicals in our environment are affecting us all."


THE FACTS ABOUT DES - STILBOESTROL

DES (diethylstilbestrol) is a synthetic form of the female hormone oestrogen. From 1938 to the early 1970s, several million worldwide were prescribed DES, especially if they had a history of previous miscarriage, bleeding or diabetes. DES was given in pills and injections and sod by over 200 drug companies, under their own brand names as well as in the generic form.

DES exposure can lead to health problems:

  • DES mothers have a slightly increased risk of developing breast cancer
  • DES daughters have a 1 in 1,000 risk of a rare vaginal/cervical cancer, clearcell adenocarcinoma. This is the reason all DES daughters need regular gynaecolological examinations. They are also at risk for reproductive difficulties: infertlilty, ectopic pregnancy, miscarriage and premature delivery, and should always receive high-risk pregnancy care.
  • DES sons have an increased risk of undescended testes and cysts on the epididymus.
Breast Cancer and HRT are more strongly linked
From the VOICE, DES Action USA

We know that DES mothers have an increase risk (about 30%) for breast cancer. DES daughters naturally wonder whether their in utero exposure to DES might also affect their risk for breast cancer. So far, this question has not been answered, and more research is needed as DES daughters age and reach the stages of life where breast cancer risk is higher.
A recent study has reinforced the link between breast cancer and another type of hormone exposure: menopausal hormone replacement therapy (HRT). The study should give pause to all women, but especially to DES-exposed women contemplating or taking HRT.
In the February 13 issue of the Journal of the American Medical Association, Dr. Emily White and colleagues at the Fred Hutchinson Research Center in Seattle reported significant increases in breast cancer risk for HRT users. Specifically, they studied 705 post-menopausal women (aged 50-74) who developed primary invasive breast cancer and 692 matched controls. They found a threefold increase in the risk of lobular carcinoma for women with a recent history of five years or more of use of HRT, and a fourfold risk if the women used combination therapy (ie. estrogen plus progestin).

For nonlobular breast cancer, primarily ductal, the risk rose about 50% among HRT users. Researchers estimated that in a given year, non-users of HRT would have an incidence of 253 cases of breast cancer per 100,000 compared with 419 per 100,000 for women with five years of recent HRT use. The bottom line: when investigators looked at all types of breast cancer, they found an increased incidence of 60-85% for HRT users, depending on whether estrogen alone or a combination of estrogen and progestin was used.
One weakness of the study was that the women themselves decided whether to take hormones, rather than being assigned to take either drugs or a placebo. A large-scale study called the Women's Health Initiative, in which women have been assigned at random to take either hormones or a placebo, is under way at the National Institutes of Health. This study should provide more definitive answers, but results are not expected until 2004 or 2005.


The Miscarriage Association of Ireland

The Miscarriage Association of Ireland - offers Information, Support and Assistance to women and their partners who have experienced miscarriage.

They can be contacted by telephone at:
01-8735702 or 8725550 or 8722914.

The contact address is:
Carmichael Centre for Voluntary Groups
North Brunswick Street
Dublin 7.


Editorial

At last, we have our new information leaflets. If you would like to have more of them to distribute in your area, give us a ring and we'll send some on to you. We are currently liasing with the Health Promotion Unit of the Department of Health about how best to get them to various outlets.
Please note our change of address as below. Our previous address c/o The National Women's Council is uncertain into the future so we decided to change to a permanent address. Don't forget to check out our website, address below too.
The Committee recently met with Dr. Mary Wingfield to discuss the outcome of last years publicity with regard to newly-identfied DES daughters. Dr. Wingfield is of the view that although the age profile of our DES daughter population is rising, it is still most important that they are identfied. The clinical signs of DES exposure diminish with the years but the number of DES daughters identified at the DES clinic since last year warrants our continued awareness campaigns. Dr. Wingfield also stressed the importance for DES daughters to attend for follow-up visits to the clinic, regardless of age or symptoms.
We understand that the delays in the results of smear tests being sent to patients attending the National Maternity Hospital has been resolved. Currently results are being released in a number of weeks which is a great improvement on past practice.
At our AGM in February, we reviewed our activities over the preceding year and the daughters get-together proved very successful. The numbers who attend the AGM are small but we take that to mean that the service provided by Dr. Wingfield and the staff at the DES clinic meets the needs of most DES daughters. We hope that the information we provide through this Newsletter also answers people's questions but we would really like some feedback from our readers: anybody out there? !
News from France is that two DES daughters who developed clearcell adenocarcinoma (CCAC) have successfully taken a test case against UBC Pharma who have been found responsible for the damage caused, it will probably lead to further lawsuits.
Thank you all for your continuing support for DES Action by way of your subscriptions; if there is a reminder in this newsletter, it's to save you having to think back!
Daphne Passmore


Newsletter Archive


Books

You may find the books listed below to be of value. The books can be ordered online from Amazon. If ordered via the links below, a small commission will be paid to DES Action Ireland.

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 Co-Director of the DES Third Generation Network.
[Hardcover] [Paperback]


DES Stories : Faces and Voices of People Exposed to Diethylstilbestrol by Margaret Lee Braun, Nancy M. Stuart (Photographer), Theo, Phd Colborn
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.