Your reviews matter to us – Thank you to all those who took the time to share their feedback about “Journal of a DES Daughter”.
A friend recently asked me a question that I often asked myself before my husband and I started on our “DES activism” journey: is it worth the time, efforts and dedication? The answer is simple: YES! Why? Just read these reviews / testimonials by people affected by the DES drug tragedy in one way or another. We are so grateful to all those who took the time to write a review about our website and we are thrilled that people find my “Journal of a DES Daughter” informative and useful. Your kind words of support keep us motivated. But before you start reading you may wonder what Alexa is…
Selection of Reviews left by DES-exposed individuals
DES – what we should know
I am mostly moved by the reality that there are people unaware of their exposure and the potential adverse health effects of diethylstilbestrol. Many don’t make the link between DES exposure and the health problems they are facing and sometimes even doctors don’t make that link either. Wouldn’t you want to know? by Nate – Aug 07, 2012
My Mom took DES, what did it do to my Sister?
I try to visit from time to time because my Mom took DES to not lose my sister when she was pregnant. I didn’t even know it until my sister told me. I was only 7 when Mom was pregnant and as a child you just want your Mom to be okay and the baby to be alright. My sister has had many health issues, her lupus may be related to this, no one really knows, but she has it in remission right now. I am angry that the patients were given a drug that could cause so many problems for the children and their children. I learn more from this site each time I stop by. Keeping up with the latest research and the lawsuits is unbelievable hard, but this site does it so well and in easy to understand language. What we don’t know is if my Mom took DES with all of us? Each of us has health issues that are very unusual, and it makes me wonder because she did have two miscarriages before she had us. She passed from Dementia, so we will never know. by Michelle – Jul 28, 2012
Wonderful informative Site
The site is very informative on the issue of a drug being administered to pregnant mothers which causes all sorts of problems. When I found out it was put in milk and being a Londoner I was forced to drink the milk as part of the school program, I am disgusted. This issue needs so much attention and unfortunately it receives so little. by Barry – Jul 25, 2012
Did your Mother take DES? It could be causing you Problems now
and one way to find out is to check out this site. I had not known that my mother took DES when she was pregnant. She decided to discontinue it and had very limited exposure. Nevertheless, my jaw dropped when I read the list of things that are common to DES daughters, since I had experienced four or five of them. Great information! by Susan – Oct 15, 2011
The Heartbreak of DES
As someone who has first hand experience with the side effects of DES, I found this blog to be a wealth of information about the drug and its use. The fact is has such lingering effects we may not even know about yet, is disturbing at best. The blog’s writer effectively combines medical research and data with her own personal journey as a DES daughter and mother, who is concerned about the yet unknown effects this drug may have on her own precious daughters and their children. The travesty against woman and men of mothers who were given this drug, as well as their future children, is something the writer communicates with passion and compassion. by Paula – Sep 03, 2011
When I started writing my “Journal of a DES Daughter” a year and half ago I never thought I would be able to reach out to so many people – not only to victims of the DES drug scandal interested in DES health issues but also to people who had never heard about what is often referred to as the “Silent Thalidomide“. Thank you for your continued support. Your reviews mean a lot to us.
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June 21st 2012 marks a Milestone in our efforts to raise awareness of the DES drug scandal and tragedy! 1000 Fans of “Journal of a DES Daughter” have joined us on Facebook to support our work and further help spread the word about the devastating impacts of this drug. My heartfelt thanks goes out to each and everyone of you for your continued support and interest in the DES cause! Thank you 🙂
Please find a list of Facebook groups and pages providing updates about the Diethylstilbestrol related issues as well as support for DES victims.
Take part in the new DES Health History survey created by DES Action USA and open to all DES-exposed individuals worldwide.
The survey is designed to establish trends and identify health issues faced by women who took Diethylstilbestrol, their DES exposed children, and also their children (DES granddaughters and grandsons).
Data from the DES community on health conditions – beyond those already known – which appear more frequently in DES-exposed individuals than among unexposed populations is critically missing. This information is needed to share with researchers who can follow-up with further study.
My mum has recently been diagnosed with Hashimoto’s Thyroiditis, an autoimmune disease that affects the thyroid. Could it be associated with her exposure to Diethylstilbestrol back in the late 60’s? Is she the only woman who was prescribed the wonder drug DES during pregnancy to suffer from this health condition?
I suffer from anxiety and stress from worrying about what the future holds for my daughters and whether Diethylstilbestrol will affect their health and chances to give me and my husband grand children. Am I the only DES daughter out there who cries in secret when her little girl plays being a mum knowing that this synthetic hormone may one day prevent that imaginative play from becoming reality due to potential DES pregnancy complications?
The children of Marie-Odile Gobillard-Soyer, a French DES mother and researcher in molecular biology, both committed suicide. She started an association and in 2011 conducted a national study among children of French DES mothers which revealed a link between DES and mental illness issues in DES daughters and sons. Could this be a worldwide trend?
In October 2011, the alarming results of a study analyzing the risks of diethylstilbestrol related disorders among women whose mothers took the synthetic hormone during pregnancy, compared to others who weren’t exposed were published in the prestigious New England Journal of Medicine. But victims of this drug scandal wonder if other health conditions that are currently not associated with DES by the medical profession could in fact be the direct result of Diethylstilbestrol exposure. Hopefully the new global DES Health History Survey will answer these questions.
Since I started my Journal of a DES Daughter, I’ve read many sad testimonials and DES stories. What they all share in common is the incertitude for the future and the feeling that the DES drug scandal and its associated health issues are not enough acknowledged publicly and by the medical profession. The DES Health History Survey will provide DES Actions groups and DES activists with the data needed to push for more studies and support for DES victims.
Why is it important to know whether your health condition is associated with DES or not? First because DES victims have the right to KNOW and more importantly because PREVENTION of these conditions when you know you are at higher risk can save lives.
The deadline for the completion and return of this survey is JUNE 15th 2012.
Please share this information on your social networks, with your friend and family who may be interested in completing the survey. I can’t stress enough the importance to take part! This is our chance to be heard and make all of our health experience counts!
2. In 1953, a study of 2000 women at the University of Chicago showed that DES did not prevent miscarriage; on the contrary, it was associated with increases in premature labor and a higher rate of abortions.
3. Despite this study, the drug continued to be used. It wasn’t until 1971 that American drug companies were legally obliged to label DES “unsuitable for pregnant women”. The FDA did not ban the drug but issued a contraindication which means that the drug DES continued to be prescribed to pregnant women even after the link between a rare form of vaginal cancer in young women and prenatal exposure to DES was established.
4. A whole generation of new medical students and doctors don’t know about Diethylstilbestrol, yet a study published in 2011 confirmed lifetime risk of adverse health effect in DES daughters (the youngest are in their mid 30’s early 40’s). DES is one of those cases where the patients often know more about its effects than the doctors.
5. DES is a multi-generational tragedy. Research by the Netherlands Cancer Institute in 2002 suggests that hypospadias a misplaced opening of the penis occurred 20 times more frequently among third-generation sons. In laboratory studies of elderly third-generation DES-exposed mice born to DES daughter mice, an increased risk of uterine cancers, benign ovarian tumors and lymphomas were found. Third-generation male mice were shown to be at risk for certain reproductive tract tumors.
Are we going to ignore these results like we did in 1939?
Third-generation children, the offspring of DES daughters and DES sons, are just beginning to reach the age when relevant health problems can be studied. Funding for more research is critically needed to continue to look for evidence of reproductive abnormalities and cancers among third-generation DES women and men to ensure they receive appropriate follow-up care.
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.
Boston, Massachusetts, USA where the DES cancer link was established 40 years ago, is making history again with the first DES Breast Cancer court cases on behalf of 53 DES daughters.
The lawyers at Aaron M. Levine & Associates law firm, after 50 years of successfully representing hundreds of DES daughters for infertility, vaginal and cervical cancer, and preterm delivery, have turned their attention to the risk of DES breast cancer in DES daughters.
Aaron M.Levine & Associates are the only law firm in America taking this focus and investment. They are currently representing DES daughters for their breast cancer injuries and are accepting new cases for review and evaluation.
The United States Center for Disease Control (CDC) and the most recent national study sponsored by NIH, (Palmer J, Wise L, Hatch E, et al. “Prenatal diethylstilbestrol exposure and risk of breast cancer.” Cancer Epidemiol Biomarkers Prev 2006;15(8):1509-1514.) concluded that DES daughters over the age of 40 are at a significantly increased risk for breast cancer. In confirming the Palmer study in court as a valid and important reopening of the never-ending DES tragedy, Dr. Adami stated:
” so the bottom line of this is, it provides strong evidence that DES exposure increases the risk, and that the risk increase starts sometime around age 40 and then grows as women get older.”
Diethylstilbestrol, primarily promoted by Eli Lilly and Company and E.R. Squibb & Sons (the predecessor to Bristol-Myers Squibb) was given to millions of pregnant women in the 1950’s and 1960’s and was contraindicated for use in pregnancy in 1971 when it was discovered to cause cancer and malformations of the reproductive tract. Massachusetts Governor Deval Patrick recently declared “DES Awareness Week” in July 2011 commemorating the experience of DES daughters and warning of breast cancer risks.
The trial taking place in federal court opened on September, 07th 2011 and continues until September, 23rd 2011 as the 53 DES daughters involved put on further biology, toxicology, oncology, and obstetrics and gynaecology experts to support Dr. Adami’s opinion of this substantial DES breast cancer risk in the daughters.
” There has been little press coverage and apparently little public attention. The chemical companies prefer it that way. It’s just two lawyers for the plaintiffs and about 20 lawyers representing the chemical companies in the court room! “
comments DES Info, a group created by several DES daughters as a way to proactively share information about Diethylstilbestrol.
Show your support for the Historic DES Breast Cancer Court Cases
The hearings are open to the public and support from the whole DES community is much needed. If you can please:
Spread the word on your social media networks
Post your comments and messages of support on DES Info who is closely following and strongly supporting the historic DES breast cancer court cases
Respond to the DES Info call to attend the hearings especially on Monday 19th and Tuesday 20th September – The result of this hearing will be to determine if the first ever DES class action suit in the US will be allowed to go forward. There has never been one before, because a class action suit requires a commonality of injuries in the US.
The outcome of the historic DES breast cancer court cases in the USA will have repercussions not only in the USA but around the world as DES victims everywhere are struggling to get compensation for the devastating side effects of DES exposure.
My thoughts are with the lawyers, scientists and more importantly the DES daughters involved in the hearings. Somehow, they represent all of us.
The Boston Federal Courthouse is at: United States District Court for the District of Massachusetts — Boston 1 Courthouse Way Boston, Massachusetts 02210 – USA (617) 748-9152
The hearings will likely begin at 9:30 a.m. and go until 4:30 p.m. each day, with lunch in between.