New Online Global DES Health History Survey

Calling all DES Mothers, Daughters and Sons!

DES diethylstilbestrol health history 2012 survey image
The DES Health History Global Survey is our chance to be heard and make all of our health experience counts!

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.

The survey can be completed online or you can download the “DES Health History Questionnaire“.

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!

New Study Suggests Lifetime Risk of Adverse Health Outcomes for DES Daughters

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.

Breat Cancer Awareness pink ribbon image
New study suggests that women exposed to DES are 82% more likely to develop breast cancer after age 40

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.

2011 Historic DES Breast Cancer Court Cases

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.”

Moakley Federal Courthouse Boston Massachusetts USA image
Historic DES Breast Cancer Court Cases at Boston Federal Courthouse (07 – 23 September 2011)

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.

If you want any more information or feel you could help in any way, please contact Aaron M. Levine & Associates.

More DES DiEthylStilbestrol Resources


Facebook issue – solved!

To all our Facebook friends – We have a good news!

After a few email communications, a few online forms to complete and a little help from a Facebook member of staff, we are pleased to announce that we are back on Facebook!

After 14 days of being inactive, Diethylstilbestrol, Journal of a DES Daughter Facebook page is live again so is the account used to administer the page.

So what happened?

Diethylstilbestrol Journal of a DES Daughter Gravatar imageFacebook, the successful social media platform where, in just a few months, we connected with more than 200 fans, 330 friends and DES activists from around the world, disabled our account on Wednesday 07th September without any warning nor explanations. As a result our page became inactive and inaccessible.

We were devastated by this action which made disappear in just a click 6 months of hard work to help raise awareness of the DES drug tragedy. Not everybody likes Facebook, but this platform is a great tool for us not only to keep up to date with the most recent DES Action Groups news and updates but to connect with other DES victims and spread the word about the DES side effects which affect millions of people around the world.

As if it wasn’t bad enough it could not have happened at a worst time when DES victims like myself were eager to read, share and comment on the fate of 53 DES Daughters currently battling in court in Boston, USA to condemn pharmaceutical companies for their responsibilities in their breast cancer associated with DES exposure.

On Wednesday 21st September 2011, Facebook emailed us back to say: “After investigating this further, it looks like we suspended your account by mistake. We are sorry for the inconvenience.” We are thrilled that the problem has now been solved and access to our facebook page has been restored.

Thank you for your kind comments and messages of support whilst we were busy trying to fix this issue. Please encourage your friends to like us on Facebook!

NEW: YouTube DiEthylStilboestrol’s Channel

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 diethylstilboestrol's channel image
NEW: find your DES Videos on YouTube DiEthylStilboestrol's Channel

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.

Playlist: DES Videos in English

YouTube DES Videos in English language playlist image
Find DES videos in English language re-grouped here

 

  • Easily find your DES videos in English language.
  • 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 .

Playlist: DES Vidéos en français

YouTube DES Videos in French language playlist image
Touvez des vidéos en langue française sur le Distilbène® ici

 

  • Trouvez facilement vos vidéos en langue française sur le Distilbène®.
  • Les films originaux (inclus titres, descriptifs et contenu originels) de six utilisateurs YouTube différents 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.
  • Contactez-nous si vous avez d’autres liens ou vidéos à partager.
  • Si vous possédez un compte YouTube, cliquez sur S’abonner pour recevoir une notification si une vidéo supplémentaire est mise en ligne .

Join us:

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:

Help us break the wall of silence around the DES issues by joining these social networks and encouraging your friends to do the same.

NEW & FREE: DES Awareness Toolbar

As a BIG THANK YOU; because our Diethylstilbestrol Blog visitors as well as our facebook page Fans are increasing steadily, we have created a FREE new toolbar.
This completely unique toolbar should give you an easier access to all your favourite DES blogs & news, your facebook info, tweets and possibly eMails.

DES Awareness Toolbar Download:

Please click onto DES Awareness toolbar free download.
Follow the instructions and it will install in seconds. Contact us if you need any assistance.

Diethylstilbestrol DES awareness toolbar image
Download the FREE and handy DES Awareness Toolbar

 

DES Awareness Toolbar Features:

From left to right:

  • Link button to Diethylstilbestrol home page
  • Link button to DES Info blog
  • Link button to DES Action Australia NSW blog
  • Menulinks button with drop down links to
    • All DES Action groups
    • Flickr Diethylstilbestrol photo gallery
    • Search
    • Del.icio.us bookmarks
  • RSS News links button => drop down links to DES posts
  • Link button to Diethylstilbestrol facebook page
  • Your personal Facebook link button
  • Link button to Diethylstilbestrol twitter page
  • Twitter links button => drop down links to DES tweets
  • Your personal Twitter link button
  • GMail button going to YOUR account
  • Options button

Once again, many thanks for your support.
We hope that you will find the DES Awareness toolbar useful as much as we do.

Flickr DES Diethylstilbestrol’s Photostream

In a bid to further raise awareness about the DES issues and reach a wider audience, we’ve created a new DES flickr page. It includes photos of DES events such as the recent DES Symposium at Massachussets General Hospital in Boston, DES adverts, pills, tablets and bottles, DES brochures and newsletters, DES graphs, press cuttings and much more.

flickr DES Diethylstilbestrol's Photostream image
NEW: flickr DES Diethylstilbestrol's Photostream

flick is an online photo management and sharing application. Its primary goals are to help people make photographs available to those who matter to them, and to enable new ways of organizing images. It offers the perfect platform to share photos from around the world.
But flick is one of those ideas that depends on interconnectivity.

We would like to invite all DES support groups and activists to collaborate to this project by contributing photos to the new Diethylstilbestrol flickr page. By sharing as many images as possible we can create a comprehensive source of DES related photos and really show how far and wide the DES issues are affecting people’s lives.

By “Geotaging” the DES photos we can highlight on the DES Diethylstilbestrol Map where the DES community is taking action to break the wall of silence around the DES issues, as well as where the DES health concerns are being ignored.

Join us on flickr:

  1. Check out the DES Diethylstilbestrol Photostream and Map
  2. If you already have a flick account, add us as a contact.
  3. Email your photos to info@diethylstilbestrol.co.uk with a short description and title.

DES Diethylstilbestrol flick page was created and is administered by Diethylstilbestrol, Journal of a DES Daughter.

If you haven’t done it yet, you can also join us on facebook and/or twitter. Our facebook community is the perfect medium to share views, photographs and DES stories. Follow us on twitter and keep up to date with everything Journal of a DES Daughter is doing.

Help us break the wall of silence around the DES issues by joining these social networks and encouraging your friends to do the same.

DES (Diethylstilbestrol) Symposium

It is now 40 years since the connection between DES exposure and Cancer in DES daughters was discovered. On May 19th 2011, the Massachusetts General Hospital (MGH) in Boston, Massachusetts, USA where this connection was first made, will be hosting a DES (Diethylstibestrol) symposium. DES daughters will share their experiences and discuss with DES specialists the lessons learned about embryogenesis, fertility, and carcinogenesis from in utero exposures. The DES symposium is free and open to the general public. Please show your support to this event by attending or spreading the word.

DES Diethylstilbestrol Symposium Massachusetts General Hospital Boston image
DES (Diethylstilbestrol) Symposium Massachusetts General Hospital 19th May 2011

The timing and location of the DES (Diethylstilbestrol) symposium have historical significance. In the late 1960s, there was an unprecedented appearance of a rare vaginal cancer in young women. Cases of Clear Cell Adenocarcinoma (CCA) were diagnosed in an age group never before found to develop it. A DES mother raised the question of whether her daughter’s vaginal cancer might be connected to DES exposure in utero. Doctors confirmed the link between DES and cancer in 1971 and published their findings in the April 1971 issue of the New England Journal of Medicine. It is at the MGH that the DES cancer link was first made on April 22, 1971.

In 2011, in the USA and in many other corners of the world, diethylstibestrol continues to affect the lives of not only the DES mothers who were prescribed the carcinogenic drug, the lives of their daughters and sons who have been exposed in utero, but also the lives of their grandchildren. And unfortunately, cancer is not the only health issue that has been linked to DES since 1971. The DES health concerns are still as relevant today as they were in the late 1960’s. Research is still needed, and more needs to be done to ensure the DES victims are not forgotten. The DES (Diethylstilbestrol) symposium is an important event which will contribute to raise awareness of the devastating long-term side effects of synthetic hormones such as diethylstilbestrol.

DES (Diethylstilbestrol) Symposium

WHEN
Thursday 19th May 2011

WHERE
M
assachusetts General Hospital in Boston, Massachusetts – Masa Ether Dome, Bulfinch Building

TIME
from 3:00 pm to 5:30 pm
Reception from 5:30 pm to 6:30 pm in the Ether Dome, Bulfinch 4.

PROGRAMME

Part I (3 – 4 pm) of the May 19, 2011 symposium will feature a DES Daughters’ Panel, moderated by Annekathryn Goodman, MD. The DES Daughters’ Panel will include:

  • Andrea Goldstein, RN – DES daughter and DES activist since 1978; recognized throughout the DES community as the historian for the DES issue.
  • Caitlin McCarthy – DES Daughter and screenwriter of WONDER DRUG (www.wonderdrugthemovie.com), an award-winning screenplay about the DES drug disaster (currently seeking financing).
  • Cheryl Roth – DES daughter who does not want the DES tragedy forgotten. She is interested in ensuring that future generations who may be affected by the ingestion of the drug by grandmothers, great-grandmothers, etc. have knowledgeable physicians to treat them.

Part II (4 – 5:30 pm) will be the Scientific Session, moderated by John Schorge, MD. Speakers and topics will include:

  • Michael Greene, MD (Division of Maternal Fetal Medicine) – History of the use of DES in pregnancy.
  • Robert Young, MD (Department of Pathology) – Pathologic changes in the female reproductive tract after in utero DES exposure
  • Thomas Toth, MD (Division of Reproductive Endocrinology and Infertility) – The structural changes in the uterus and cervix and implications for fertility after in utero DES exposure.
  • Marcela Del Carmen, MD (Division of Gynecologic Oncology) – Clear Cell Carcinoma of the vagina in DES exposed women.
  • Annekathryn Goodman, MD (Division of Gynecologic Oncology) – Endocrine disruptors and the potential molecular basis of carcinogenesis DES exposure.

DES events such as the DES symposium are a great acknowledgement that Di-ethyl stilbestrol is not something of the past. The DES tragedy is far from over so please help support this event by attending or spreading the word. The Diethylstibestrol DES symposium is free and open to the general public.

This event is sponsored by Vincent Obstetrics and Gynecology.

Sources: DES Info.

Wanted: DES Aware Doctors

Diethylstilbestrol (DES) has affected and continues to affect in many different ways the health and lives of those who have been exposed to this drug more than 30, 40, 50 years ago. Cancer, infertility problems, ectopic pregnancies, premature labour, depression, genital abnormalities are just a few of the many delayed side effects of DES exposure; but what most DES victims share in common is that at some point in their lives they all had to face doctors who completely dismissed their DES concerns, doctors who disregarded their medical conditions as being a consequence of diethylstilbestrol.

Despite overwhelming medical evidence, DES continues to be dismissed by doctors

Three wise monkeys copyright Alberto Sebastiani, DES Aware Doctors wanted image
Three wise monkeys dressed up as doctors © Alberto Sebastiani

Over 10 million people have been exposed to diethylstilbestrol worldwide between 1938 and the late 70’s, early 80’s in some countries. After more than 40 years of research, there are confirmed health risks and side effects associated with DES exposure.

An entire generation of women have had great problems with infertility and pregnancy. Women and girls as young as nine years old have died from a rare form of vaginal cancer called adenocarcinoma, others have suffered from irreparable genital malformations. Many DES sons have experienced health problems including undescended testicles, epididymal cysts, and testicular cancer. Yet, many doctors dismiss a history of DES exposure as the cause of their patients’ conditions – even for those who were born in the timeframe the drug was prescribed to their mums before a health warning was issued by the U.S. Food and Drug Administration (FDA) in 1971 and even for those who have evidence that they have been exposed before birth to this carcinogen and teratogen.

When Michael Freilick founder of the National DES Sons Network said to his doctor he was a DES son, his doctor replied: “Forget it. It has nothing to do with your testicular cancer.”

When DES daughter Kathy saw her doctor to share her concerns about DES she was told that because she had been conceived a few years after doctors were supposed to stop prescribing DES, she couldn’t have been exposed. Yet her genital abnormality is only seen in DES daughters.

I hear the struggles, the anger, the depression, the cries of “why me?” echoing from every part of the blogosphere. And these insensitive docs just blithely dismiss it as not a big problem! (…). And then, there are the stories of multiple miscarriages, stillbirths, and so on. Stuff I don’t even want to imagine, but I know is a daily reality to a lot of DES exposed women” writes Kathy in her blog “Women to women childbirth education”.

I recently gave a DES leaflet to my physician hoping it would make her more aware of DES and breast cancer risks for women of my age. She smiled when she read that DES was causing infertility problems. She commented: “Well surely you’ve not been affected by infertility problems with 3 daughters…”.

Ignorance kills

The lack of recognition of the risks and health issues associated with DES is very distressing for those who have to put up with the consequences of this drug disaster in their everyday lives. This is not only a burden for DES daughters and sons throughout their lives but it poses a health risk in itself due to the consequences of wrong diagnosis, or lack of preventive care which can sometimes lead to disastrous consequences.

DES Aware Doctors wanted, Saskia ou le deuil d'un bébé Distilbène image
Saskia or the mourning of a Distilbène baby

Anne-Françoise Lof in her beautifully written book “Saskia or the mourning of a Distilbène baby” tells the sad story of her baby daughter born too early to survive at 22 weeks pregnancy. Anne-Françoise knew her mum had been prescribed Distilbène® during pregnancy, she warned her doctor. Yet, the high risk of premature labor was dismissed. The story of not only Saskia but many other premature babies shows the tragic consequences of some doctors’ misinformation and dismissive attitude towards diethylstilbestrol.

Before the FDA issued a warning that DES was not safe for mums and their unborn babies, many doctors happily prescribed a drug that had not been properly tested and some even continued to prescribe it long after the warning was issued. Others questionned its efficiency and raised their concerns about the possible side effects. Years later, now that many health problems have ruined and continue to ruin the lives of DES exposed individuals very few aware doctors acknowledge the link between diethylstilbestrol exposure and their patients’ conditions.

Many young doctors don’t even know about DES and its consequences. To them it’s something of the past that their predecessors have prescribed in the belief that it would prevent miscarriage, especially if the women had a previous history of miscarriage, bleeding during pregnancy or diabetes. Most DES daughters and sons know more about diethylstilbestrol than their doctors and end up in an awkward situation where they have to educate their doctors in order to get appropriate treatment and preventive care.

DES Aware Doctors List

Most DES Action Groups have compiled a list of doctors aware of the DES history and its devastating consequences. Back in 2001, when I asked DES Action UK if they could provide me with their doctors list they provided me with a list of only four aware doctors, all London based, yet it is estimated that more than 300,000 people have been exposed to diethylstilboestrol in the UK. In the U.S. the doctors list is a compilation of the names of aware doctors given to DES Action USA by its members who were satisfied with their care. These recommended doctors are not considered DES experts, but rather aware doctors who do not dismiss DES concerns. I have no doubt that if DES Action Groups were naming and shaming the doctors who dismiss the DES concerns of their patients the list would be a lot longer.

My DES pregnancy had an happy ending thanks to a fantastic, sensitive and well informed doctor / professor. Without him I wouldn’t be celebrating mother’s day today. So there are aware doctors out there who know how to help DES victims. If you know a sensitive doctor that you would recommend please contact your local DES Action Group and share his / her contact details. It may help others.

If only doctors could understand, be more informed, aware and sensitive to what diethylstilbestrol has done to people’s lives. Di-ethyl stilbestrol is not something of the past. It hasn’t gone away. Years after exposure, the consequences and health risks for DES daughters, sons and their children are still there. The delayed consequences of the drug are felt and will most likely continue to be felt for many years to come as reveal new research carried out to determine the impact on the third generation. DES daughters and sons want answers and recognition. We need, we demand sensitive, aware doctors who acknowledge the danger and continued risks of DES exposure. Is it too much asking? The FDA waited 40 years to acknowledge the DES tragedy. How much longer doctors will need to stop dismissing their patients’ DES concerns?

Sources: Women to women childbirth education, DES Gone but not Forgotten.

International Women’s Day

Celebrate DES mothers & daughters who advocate for all DES victims!

Tuesday 8th March 2011 marks the centenary of International Women’s Day (IWD). Celebratory events are taking place across the world marking women’s achievements and contributions to society.

Since 1911, International Women’s Day offers the perfect opportunity to appreciate the women who have the biggest influence in our lives whether they are politicians who are a making difference in our local community, celebrities we admire, or simply mums and grandmas who balance work and home beautifully or to whom we look up to.

This Tuesday 08th March, why not make International Women Day 2011, a day to celebrate DES mothers and DES daughters.

Join “Journal of a DES Daughter” in celebrating the courage of all the women who find the strength to fight every day against the devastating side effects of diethylstilbestrol and acknowledging the tremendous work of those who dedicate their lives to advocate for the victims of the DES tragedy.

Join the International Women’s Day celebrations by:

  • Attending the facebook event “Journal of a DES Daughter – International Women’s Day”
  • Changing your facebook status to read: “Today I celebrate International Women’s Day and the DES mothers and daughters who advocate for all the DES victims”.
Val Pat Cody DES Action USA co-founder image
Val Pat Cody, health activist and DES Action USA co-founder - Photo courtesy of DES Action USA

Let’s celebrate women such as Val Pat Cody (health activist and co-founder of DES Action USA who sadly passed away in September 2010), Anne Levadou (President of DES Network France), Andrea Goldstein (DES activist and DES historian), Carol Devine (founder and coordinator of DES Action Australia – NSW) and Caitlin McCarthy (award winning screenwiter currently working on Wonder Drug the true story of DES); as well as all the activist women who contribute to raising awareness about DES exposure and speak out on behalf of all the DES victims.

These women who give their lives to help others are a true inspiration to me and I am sure to many of us. Carol Devine comments on her blog: “Pat was a remarkable women. During the process of our establishing DES Action Australia-NSW, Pat was a great mentor and friend. If not for her invaluable ideas and encouragement, the group may not have lifted off the ground. She will be very much missed“.

Join the “Journal of a DES Daughter International Women’s Dayfacebook event.

Happy International Women’s Day to all DES mothers and daughters!