A study published on October 06th, 2011 in the prestigious New England Journal of Medicine tallies the risks of diethylstilbestrol related disorders among women whose mothers took the synthetic hormone during pregnancy, compared to others who weren’t exposed.
Among these health risks, the study suggests that women exposed to diethylstilbestrol, commonly called DES daughters, are 82% more likely to develop breast cancer after age 40.
Overwhelmed by the extensive media coverage that the publication of this study sparked in the USA, Canada, Australia and France but upset by the total absence of information in the UK, I contacted a health journalist at the UK Press Association to request for this information to be made available to the general public and widely shared and circulated in the UK press.
Given that October is Breast Cancer Awareness Month and 2011 marks the 40th Anniversary of the DES cancer link, I am hoping that my emails to the Press Association won’t go unnoticed and will grab the attention of UK journalists.
Findings of the DES Study
As part of this new study, researchers at the National Cancer Institute analyzed data from three separate studies that have followed more than 4,000 DES-exposed women since the 1970s. Compared with a control group of unexposed women, DES daughters were found to have higher rates of infertility (33% versus 16%), miscarriage (50% versus 39%), preterm delivery (53% versus 18%), and ectopic pregnancy (15% versus 3%). The DES-exposed women were also 82% more likely to develop breast cancer after age 40, and more than twice as likely to experience menopause before age 45. For most of the health conditions included in the study, the increase in risk was even greater for DES daughters who had been exposed to especially high doses of the drug.
“Our study carefully documents elevated risk for DES-exposed daughters for a host of medical problems — many of them also quite common in the general population,” said study author Robert N. Hoover, M.D., director of the Epidemiology and Biostatistics Program in NCI’s Division of Cancer Epidemiology and Genetics. “Without the sentinel finding of a very rare cancer in young women, and without the sustained follow-up of those who were exposed, we would not know the full extent of harm caused by DES exposure in the womb.”
Many of the potential health complications identified in the new study have been raised in previous research, in some cases with conflicting results. A 2010 study of DES daughters conducted in the Netherlands, for instance, found no link between exposure and breast-cancer risk. However a 2006 study had already suggested a higher risk of breast cancer in DES daughters. This year (2011), fifty-three DES daughters who developed breast cancer have brought a lawsuit against several DES manufacturers; the lawsuit is currently under way in Boston, USA.
What the study doesn’t mention is the health risks for DES sons. Despite the fact that women who have been prescribed diethylstilbestrol during pregnancy gave birth to as many sons as daughters, DES sons have once again been left out from a research study. Why researchers fail to include all those who have been affected, men and women? To me, we will never truly understand the extent of the DES tragedy if we don’t take a comprehensive and global approach to the problem. So even though, I welcome this study the need for more research remains obvious.
Situation in the UK
According to the support group DES Action UK who unfortunately is no longer active, more than 300,000 people in the UK (5 to 10 millions worldwide) have been exposed to diethylstilboestrol. So why countries like the UK fail to inform the general public about such an important study?
DES was prescribed to pregnant women in the UK between around 1950 and 1975, mainly to prevent miscarriage. This was despite the fact that research published in the American Journal of Obstetrics and Gynecology in 1953 revealed that women receiving DES suffered a higher rate of miscarriage. The synthetic estrogen was developed in England in 1938. It wasn’t patented and went on to be produced by more than 200 companies. In the UK, DES was known as Stilboestrol® and was sold under many brand names.
Yet, the DES tragedy remains largely unknown in the UK. Some British doctors have never heard of DES and there is only one dedicated clinic in Europe, based in Ireland. Many women are unaware that their infertility or cancer is a result of their mother having taken the drug. All of these women are not receiving proper medical treatment, or making truly informed decisions about their healthcare, as a result.
As a DES daughter myself I have reason to be interested in this new report in the New England Journal of Medicine that takes a thorough look at the heightened medical risks associated with prenatal DES exposure. And I am sure I am not the only one in the UK who feels the same. Despite overwhelming evidence of numerous health risks associated with DES exposure nobody seems to care in the UK. Media interest in the DES issues would definitely help to reach out to all those affected but unaware that their health problems may be related to Stilboestrol®.
The lack of UK media coverage on this new important study just shows how thick the wall of silence around the DES issues in the UK is. To share my experience and knowledge of this drug, I started this personal blog earlier this year for DES mothers, daughters and sons, and others interested in the DES issue. But this is a drop in the ocean. I need support from the media to reach out to people who may have been exposed. I sincerely hope the UK will show an interest in this study and will take on this opportunity to break the wall of silence.
Several published studies in the medical literature on psycho-neuro-endocrinology have examined the hypothesis that prenatal exposure to estrogens (including Diethylstilbestrol) may cause significant developmental impact on sexual differentiation of the brain and on subsequent behavioural and gender identity development in exposed males and females. There is significant evidence linking prenatal hormonal influences on gender identity and transsexual development.
In 1999, Dr. Scott Kerlin (founder of the DES Sons International Network) began researching the effects of Di-Ethyl Stilbestrol® on the health of genetic males who had been exposed prenatally. A substantial amount of research had been done on women who had been exposed but relatively little had been done on men and DES sons. When it became apparent that a significant portion of his research group were either transsexual, transgendered or intersexed, he began to explore the possibility of a connection between prenatal DES exposure and gender variance. Dr. Kerlin is not the first researcher to note a correlation between DES exposure and feminized behaviour in genetic males; studies go back as far as 1973. However, Dr. Kerlin has delved much deeper than those who came before.
Radio Interview: DES Exposure and Gender Variance
Listen to KWMR Radio Interview withDr. Dana Beyer on the side effects of Diethylstilbestrol and its influence on gender identity
Dr. Dana Beyer is the medical advisor and web manager of the DES Sons International Network, on the effects of endocrine disrupting compounds such as Diethylstilbestrol, DDT, phthalates and bisphenol A, on human sexuality and reproduction, as well as providing personal support and mentoring. In 2005 she presented a breakthrough paper, with her colleagues Dr. Scott Kerlin and Dr. Milton Diamond, to the International Behavioural Development Symposium, delineating the impact Di-Ethyl Stilbestrol® has had in causing intersex and gender variations in human beings.
I understand this is a sensitive and controversial matter but I feel it is important to bring this issue to light and break the wall of silence around what is still nowadays considered as “taboo”. I would like to invite all DES exposed individuals who have a knowledge of DES exposure and gender identity either through research or personal experience to share their comments and stories.
In a bid to even further raise awareness about the DES issues, and help you find more (easily and/or faster) DES videos, we’ve created a new DES YouTube page.
YouTube is an online video management and sharing application. Its primary goals are to help people make videos available to those who matter to them, and to enable new ways of organizing short films. It offers the perfect platform to share videos from around the world.
Original films (with original title, description & content) from five different YouTube users have been re-grouped here.
Diethylstilbestrol, Journal of a DES Daughter is NEITHER responsible for any of the content published, NOR trying to misguide web surfers on who the real video makers/owners are; their name being clearly mentionned.
Please contact us if you have other links or videos to share.
If you already have a YouTube account, click on Subscribe to be notified when new content is being added to this channel .
Les films originaux (inclus titres, descriptifs et contenu originels) de six utilisateurs YouTubedifférents ont été regroupés.
Le Blog Diethylstilbestrol, Journal of a DES Daughter n’est ni responsable du contenu publié, ni susceptible de vous induire en erreur sur l’identité des véritables réalisateurs des films; leur noms étant mentionnés.
Si vous possédez un compte YouTube, cliquez sur S’abonner pour recevoir une notification si une vidéo supplémentaire est mise en ligne .
We would like to invite all DES support groups and activists to collaborate to this project by contributing films to the new DiEthylStilboestrol’s YouTube Channel created and administered by Diethylstilbestrol, Journal of a DES Daughter. If you haven’t done it yet, you can also:
Join our facebook community; the perfect medium to share views, photographs and DES stories.
Follow us on twitter and keep up to date with everything this DES blog is doing.
The drug Mediator remained on the market from 1976 until 2009 when the risk of fatal heart disease was known since the 1990s. French health experts now believe that Mediator developed for treating overweight diabetics, could have killed between 500 and 2,000 people before it was finally banned. It stayed on the market despite a succession of warnings over its side-effects, which include heart valve disease and pulmonary hypertension. It was also hugely misprescribed, with doctors routinely handing out Mediator as an appetite-suppressant for people with common or garden weight problems. A compensation fund was established by the French state for victims. But Mediator is not the first drug scandal!
Below is a translated article from Anne Levadou, President of Réseau D.E.S. France published in the Independant Web Newsletter “Rue 89”, June 08th 2011.
In order to avoid any major reform, the government is trying to convince us that the present Mediator scandal is the first major medical disaster. But let’s not forget that this is far from the first one : Thalidomide, Distilbène® came before Mediator… with every specific crisis, our society tries in the best of cases to find some specific reply. At the worst, to forget it.
The incoherence in dealing with health disasters leads to injustice and discrimination. The massive media coverage of the Mediator affair is parallel to the silence surrounding other victims. The denial of justice is not acceptable, for example, for the victims of Distilbène®, while this DES example is taught as a “model” of the mistakes not to be made.
Distilbène®, massively given to pregnant women until the 80s (1977 in France), has the perverse impact of not only affecting the women taking it, but even more affecting their children, and even grandchildren.
Let’s not forget also the victims of Lyell and Stevens-Johnson syndromes, rare reactions to drugs, leading to major damage to the skin and mucous membranes. It is inadmissible that all these victims – because their pathology is due to some other drug – should be “forgotten” and receive no compensation.
For the victims : a struggle against obstacles
Having no other choice, all these victims have to support, at their own costs and in media silence, years of personal procedures, medical examinations and cross-examinations in order to hope at the end to receive some recognition of the pharmaceutical company’s responsibility and some compensation for their injuries. At the issue, some discover that, because the risk was mentioned on the leaflet, that they have no legal recourse and their case is rejected.
However, as for Mediator, the serious effects have been proved. The permanent damages on health are the results of drugs or treatment approved by the official sanitary and political administrations and financed by the collectivity. Drugs represent an undeniable progress in our society, and the pharmaceutical industry contributes to the national wealth, but the serious side effects are in balance with the benefits made.
A “mutual pooling” of risks would be logical
Why not to-day, use the Mediator case to move towards a general response on the principle of global responsibility linked to the risks of taking drugs? The government must use this scandal as a lever to progress towards some definitive social solution to what is proved a collective risk.
The profits for pharmaceutical companies from the commercialization of a drug is assured by the solvency of the National Health Service which is itself financed by health insured tax payers. In the same way as professional risks, the costs of compensation for the victims could be automatically paid by the industries creating the risk. The mutual pooling of a collective risk, by the pharmaceutical companies concerned, would offer a double advantage : guaranteeing rapid compensation for the victims, but also, encouraging these companies to develop prevention measures.
The dissuasive effects of “class actions”
The Mediator scandal should also lead towards the possibility for victims to take collective legal action. The absence of collective procedures (“class action”) results in unfair personal struggles. While the victims of medical scandals are hoping for collective replies, why was this subject completely absent from the recent Drug Survey Symposium? It is certainly interesting to talk for hours about the code of ethics for drug representatives, or about providing doctors with updated information : whereas there would be an immediate auto-regulation effect from the sword of Damocles effect of “class actions” on pharmaceutical companies.
There is now an open choice : either our society offers a definitive response concerning the responsibility of drugs, or we will once again discover in a few years, or even in a few months, yet another drug scandal. As victims and citizens, we are expecting a wide-scale reaction and a truly political solution. Without this, Mediator will simply remain just another scandal.
Sophie Le Pallec, President of Amalyste association Anne Levadou, President of Réseau D.E.S. France Jean-Pierre Sueur, Senator of Loiret, France
Diethylstilbestrol (Distilbène), the synthetic sex hormone prescribed in France up to 1977 (and in many other countries under different names) to pregnant women to prevent miscarriage and premature labour, has caused genital abnormalities, infertility problems, and cancer in children exposed in utero to the drug. A new report reveals that DES may have done even more damage, often associated in cocktail with other estrogens as 17-alpha Ethinyl oestradiol (synthetic EE) or with synthetic Progestin.
A disturbing study conducted since 2004 by Marie-Odile Soyer-Gobillard, former director emeritus at the CNRS (French National Center for Scientific Research) reveals a link between DES and mental illness issues. In January 2011, and next in October 2011, 6 members of the association Hhorages (Halt to Synthetic Hormones for Pregnancies), of which Marie-Odile is the president, were received by the AFFSSAPS (the equivalent of the Food and Drug Administration in the U.S. now named AFSM, French Agency for Medicament Security) to discuss her findings. A working group composed of experts from the agency and the association will now be formed in April.
DES Psychological Side Effects New French Stats
So what does the French study (published in the International Journal “Medicine and Longevity*) reveal? Marie-Odile sent questionnaires to 529 DES mothers and studied a group of 1180 children of which 740 have been exposed to DES in-utero. Of this group, 15 were still born and 684 suffer from psychiatric disorders and / or physical malformations while 41 were not ill. Amongst the studied population, the psychiatric illnesses are essentially depression, anorexia, schizophrenia, …). Today, Hhorages tots up 1223 testimonies representing 1223 mothers with a total amount of 2674 children. Amongst them, 1676 were in utero exposed to synthetic hormones, 1549 exposed children are ill: amongst them: 916 present psychic diseases « only », 448 present somatic and psychic diseases , 183 present somatic diseases « only »; 126 exposed are not ill. Amongst the observed siblings in the same family, only those who have not been exposed to DES in-utero, don’t show signs of psychiatric disorders …. Could this be just a coincidence?
Another shocking statistic: of all the cases reported since 2004, when the study started, Marie-Odile identified 150 suicide attempts series and 48 suicides. In some families, 2 or 3 children have ended their lives leaving their parents with a profound sense of guilt. Amongst the observed siblings in the same family, only those who have not been exposed to DES in-utero, don’t show signs of psychiatric disorders… Could this be just a coincidence?
Herself DES mother, Marie-Odile Soyer-Gobillard has been fighting since 1998 for the recognition of the link between synthetic sex hormones taken during her pregnancy including Distilbène®, and the psychological disorders of her own children, Nicolas and Valerie, who both committed suicide three years apart in 1995 and 1998 at age 28 and 27. She founded the association Hhorages with 3 other mothers in 2000 to raise awareness of the risks synthetic sex hormones prescribed during pregnancy pose on children born from these pregnancies.
According to Fran Howell (Executive Director DES Action USA), American researchers have been having trouble finding a solid link between DES and mental illness issues, except depression. But through the years DES Action USA have heard many reports of DES-exposed individuals suffering with psychological issues.
Pat Cody, co-founder of DES Action USA, wrote in the spring 2005 issue of VOICE (DES Action Newsletter) about why it is difficult for researchers to study these questions and develop definitive answers: “Here, some of the difficulties in getting a valid study are caused by a wide spread in the DES dosages mothers got, in the time in pregnancy when they got it, and for how long they took it (…). Sex hormones are, however, known to have effects on the organization of the brain in experimental animals with consequential behavioural effect”.
A 2005 study carried out by Professor Caston, a neurologist at the University of Rouen (France), has demonstrated that rats born to mothers treated with synthetic sex hormones developed anxiety and depressive behaviour. “These results could be explained by the effect of the molecule on the part of the brain involved in emotional processes, which is under development in foetuses”, the report says.
Could all the known DES side effects which have destroyed the lives of many DES mothers, daughters, and sons, just be the top of the iceberg? Already concerns for the grandchildren of DES mothers arise with a higher risk of hypospadias (misplaced opening of the penis) in sons of DES daughters. If more DES side effects are scientifically validated, DES could well be a real time bomb!
I welcome Marie-Odile’s research study and thank her and Hhorages for their combat and work on behalf of all the DES victims who suffer from the mental side effects of this drug.
More research is critically needed not only to provide DES-exposed individuals with appropriate care and support but for the next generation and all the people who may continue to suffer from the physical or mental consequences of this drug in the future. Please support Hhorages and your local DES Action group, and stay tune for more revelations about DES exposure and its devastating side effects.
DES Action USA Voice newsletter spring 2005
DES Action USA
*Soyer-Gobillard, M.O. 2011. Endocrine disrupters and effects on behavioral disorders: No, we have not as yet learnt all our lessons concerning the DES story. Médecine et Longévité, (Elsevier Masson), 3, 67-74. ** Nicolas Kalfa, M.D., Ph.D,.Francoise Paris, M.D., Marie-Odile Soyer-Gobillard, Ph.D., Jean-Pierre Daures, M.D., Ph.D. and Charles Sultan, M.D., Ph.D. Prevalence of hypospadias in grandsons of women exposed to diethylstilbestrol during pregnancy: a multigenerational national cohort study. Fertil Steril, 2011, 95, 2574-2577(published by American Society for Reproductive Medicine).