DiEthylStilbestrol DES Website New Design

With 2016 approaching, we thought it was time to be back publishing posts as well as time for few changes…

image of a DES-tragedy sky
The “Evening rays” awesome graphic is by Douglas M. Paine, some rights reserved.

You’ve been exposed to DES,
so what?

Fist, the header image. There are hundred of studies which prove that DES has an endless list of side-effects. Some posts such as My DES Daughter Journey – Doctors (03.2011), Wanted: DES Aware Doctors (04.2011) and A focus group study of DES daughters: implications for health care providers (2000 study) mentioned the DES-victims distrust of the medical profession. So, we wanted a header reminding the severity of the DES tragedy as well the uncertainty of the future for the DES-affected  generations…

image of DES-responsible-design
WordPress says that theme Twenty Sixteen. will make your homepage look sharp on any device, and impeccable polish in every detail.

Fluid Design
and Responsive Images

Thank you theme Weaver for the years we spent together, from now on, we opted for the WordPress default theme for 2016: Twenty Sixteen.
Here are some of the theme new key features:

Introducing Twenty Sixteen

  • With or without sidebar, your call.
  • Overhang (the column) with a full-size image,wider than or equal to 840px.
  • Use the excerpt section to add a catchy, short post intro showing under your main header / post title.
  • Customize block quotes – put them left, right, where you like them!
  • Display links to your social media profiles with perfectly sized icons in the footer with a custom menu.
  • Add a call to action under your posts and pages, with 1 or 2 widgets displaying below your content.
  • For more information, visit the WordPress theme page and  demo version.

I can’t wait to get your opinion

Please tell me what you think, honestly, the good and bad…
Cheers

DES Diethylstilbestrol reviews

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.

1000 Thanks to our 1000 Facebook Fans !

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.

Spread the Word

Diethylstilbestrol, Journal of a DES Daughter on Facebook image
Thank you for sharing our page !

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.

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.

Victory for a DES 3rd generation victim : the pharmaceutical company condemned

June 09th 2011 marks a turning point in France for DES victims with a court verdict in favor of a DES Grandson who was born prematurely. This great news has been welcomed by the DES community and Action Groups from all corners of the globe. Fran Howell, DES Action USA Director, commented: “Louis’ win is a huge victory and around the world people are celebrating with him and his family“. We are all so happy for Louis and his mother Hélène.

Below is a translation of a Réseau D.E.S. France press communication –  June, 10th 2011

Court case on DES 3rd generation Versailles court of appeal image
Court case on DES 3rd generation - Versailles court of appeal

After a first judgement against UCB Pharma, the Appeal Court of Justice confirmed the first verdict on June 09th 2011 : 1,7 million euros damages are to be paid to Louis’ family.

Hélène was born in 1958. Her mother was prescribed Distilbène® during her pregnancy, making her one of the 80,000 French “DES daughters“. In 1990, during the 6th month of her pregnancy, Hélène gave birth to Louis, severely premature and suffering from important sequels : his handicap is assessed as 80% ; he can neither read nor write, moves in a wheel-chair and needs constant help. He is yet another victim of the drug Distilbène®…  taken by his grandmother in the 50’s !

We share Hélène’s satisfaction and relief that the prejudice has at last been recognized by the Appeal Court to enable her family to live onwards. She can now sleep at night knowing that her son’s future is assured.

This decision is all the more important that it is the first time the the Appeal Court has judged a DES Distilbène® case concerning the 3rd generation.

This victory is consecutive to a well-prepared medical file which proves :

  • a prescription of Distilbène® to Hélène’s mother
  • that Hélène’s pregnancy was closely controlled because of her in utero DES exposure
  • Louis’ medical follow-up was in conformity to the 1990 protocols
  • that Louis’ condition has no other cause than his premature birth.

Finally, we are satisfied that the Versailles Court of Appeal confirmed the responsibility of UCB Pharma for their lack of diligence in commercializing Distilbène® on the market.

We again hope that this decision will bring a term to the difficult struggle for justice, started by Hélène in 2002.

In France, Distilbène® and Stilboestrol® (the commercial names for the diethylstilboestrol synthetic hormone – DES in abbreviation)  was prescribed to 200 000 pregnant women to avoid miscarriages. 160 000 children were born from these pregnancies. For the “DES daughters”, the side effects are : sterility, miscarriages, premature births, cancers…

Sources: Article courtesy of Réseau D.E.S. France

Can the Mediator scandal lead to justice for drug victims ?

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.

Health precedents

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

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.