2012 DES UK Media Coverage

Thousands of women could be at risk from silent Thalidomide

Since Sunday 22nd January 2012, there has been an unprecedented flurry of media attention on DES related health issues in the United Kingdom. This comes after two journalists – Sarah Morrison and Jaymi McCann – thoroughly investigated DES issues in the UK and published an exclusive DES report in the Independent on Sunday: “Thousands of women could be at risk from silent Thalidomide. Very quickly ripple effects started and the story spread not only throughout the country but as far as the U.S. and Australia. Many newspapers and websites caught up on the story thus increasing DES awareness locally and nationally and forcing UK health websites to update their DES information.

“Silent Thalidomide” the Secret Killer – Ten of thousands of British women in pregnancy drug scare – Exclusive Report

Independent on Sunday – Jan 22, 2012 : “Thousands of women could be at risk from silent Thalidomide”

Daily Mail – Jan 22, 2012 : ‘Silent Thalidomide’: Thousands of mothers and their daughters at risk of cancer from anti-miscarriage drugs they took decades ago

Lifestyle AOl –  Jan 22, 2012 : “Anti-miscarriage drug could cause cancer in daughters of women who took it decades ago”

Yorkshire Post – Jan 23, 2012 : “Call for compensation over pregnancy drug “

Press Association ( UKPA) – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters'”

Once the story was published by the UK Press Association it started to spread all over the country, here are a few websites where it was re-published:

London Evening Standard – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters'”

Yahoo News – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Topix, Local News Bristol – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

The Bucks Herald – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Fenland Citizen – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Crawley and Horley Observer – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Pendle Today – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Harvill Echo – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Boston Standard – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Buckingham Today – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Leigh Reporter – Jan 22, 2012: “Lawyer hunts for UK ‘DES daughters”

Halifax Courier, the Voice of Calderdale – Jan 22, 2012: “Lawyer hunts for UK ‘DES daughters”

Selby Times – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Peterborough Today – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Newmarket Journal – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Scaborough Evening News – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Hastings & St Leonards Observer – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Hemel Today – Jan 27, 2012 : “Lawyer hunts for UK ‘DES daughters”

Isle of Man Examiner – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Sussex Express – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

IC Newcastle – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Diss Express – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

News Post Leader – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Guardian – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Fleetwood Weekly News – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Suffolk Free Press – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Thame Gazette – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

Pocklington Post – Jan 22, 2012 : “Lawyer hunts for UK ‘DES daughters”

………………………. The list continues endlessly to cover 16 Google Search Pages. Enter “Lawyer hunts for UK ‘DES daughters” in your Google Search Box for the full list. Jaymi McCann’s report in the Independent on Sunday truly created ripples, waves, or should I say rather a tsunami in the UK Press.

I am thrilled that the work my husband and I have been doing over the past year or so to raise DES awareness in the UK via our Social Media networks is paying off.  As far as I know when Jaymi McCann stumbled upon my “Journal of a DES daughter” she knew little about DES but my story and the information featured in my blog was enough to spark her interest. I can’t thank her enough for the extraordinary work she and Sarah Morrison have done to pull this excellent report together. I am grateful for the opportunity they’ve given me to share my DES story to such a large audience and for the repercussions the report will have for DES daughters and hopefully also DES sons and DES grandchildren in the UK . Now the UK government and the NHS must react, launch an national awareness campaign and ensure DES victims in the UK receive appropriate care and monitoring. Let’s keep the pressure on …

This slideshow requires JavaScript.

More DES DiEthylStilbestrol Resources

SlideShow DES Research

About chemicals that, at certain doses, can interfere with the endocrine (or hormone) system in mammals

DES and EDCs Research

The DES Mouse at 6 Months of Age

 

The FlickrDES Researchphoto set features a selection of graphs, stats and the 2011 AFSSAPS DES survey report from France about the adverse effects of Diethylstilbestrol, the synthetic oestrogen prescribed to millions of pregnant women around the world decades ago in the mistaken belief that it would reduce the risk of complications during pregnancy.

More DES DiEthylStilbestrol Resources

DES Picnic Social Event in Australia

DES Action Australia: support and advocacy for those exposed to DES ; related hormones and endocrine disruptors

A few weeks ago DES Action Australia NSW in Sydney had a notice published in the RSVP section of the Sydney Morning Herald, inviting people affected by DES (diethylstibestrol) to commemorate the 40th anniversary of the DES cancer finding.  For this occasion Carole Devine, DES Action Australia NSW founder, is inviting the group members and associates, their friends and families to meet up for a DES picnic community event.

DES ACTION AUSTRALIA BIG PICNIC

DES Picnic Community Event in Australia

Where: Lilies on the Park (cafe), Bicentennial Park,
adjacent to Sydney Olympic Park, Homebush
When: Saturday November 26th – 11.30 am
Directions: Follow signs to Sydney Olympic Park.
On Australia Ave take first turn on right into Bicentennial Ave.
(Lattice clock tower at park entry).
Event attendees will then move on to a nearby picnic area.

If you’ve been affected by the DES drug and are anywhere near Sydney Olympic Park on Saturday 26th November, join your local DES community and bring along a picnic or buy food at Lilies Cafe. Just come along and look out for DES Action Australia identifying marker – yellow balloons!

Tea, coffee, juice will be provided and there will be an opportunity to hire bicycles at the park for AU$ 15 per hour.

For more information about the 40th Anniversary of the DES cancer finding watch this video featuring US researcher Dr Arthur Herbst.

To get an idea of interest and to help with catering, DES Action Australia NSW is asking participants to RSVP as soon as possible by emailing c_devine@bigpond.net.au or phoning 02 98754820. For more information about the great work they are doing, please visit DES Action Australia NSW blog.

HAPPY DES PICNIC EVERYONE!

More DES DiEthylStilbestrol Resources

The DES Generations Concern

Diethylstilbestrol DES has consequences for those who took it, their children and maybe their grandchildren

Meet Caitlin McCarthy, a multi-award winning writer and DES Daughter. Diethylstilbestrol DES has consequences for those who took it, their children and maybe their grandchildren.

More DES DiEthylStilbestrol Resources

SlideShow DES Media

A selection of press cuttings from around the world about the adverse effects of Diethylstilbestrol

DES Press Releases

DES Exclusive Report, UK - Independent on Sunday Front Cover

 

The FlickrDES Press Releasesphoto set features a selection of press cuttings from around the world in English and French about the adverse effects of Diethylstilbestrol, the synthetic oestrogen prescribed to millions of pregnant women around the world decades ago in the mistaken belief that it would reduce the risk of complications during pregnancy.

More DES DiEthylStilbestrol Resources

DES and Breast Cancer

A breast cancer survivor, Jackie, reports on her DES journey

Jackie White is one of 53 women who is bringing the DES Breast Cancer lawsuit in Boston against the maker of the drug DES (diethylstilbestrol) prescribed to millions of women decades ago.

According to a large study, DES, the anti-miscarriage drug used in the USA until 1971 but also used in Australia and many European countries well after 1971, has been linked to health problems — including breast cancer, infertility, difficult pregnancies and early menopause — in the daughters and the granddaughters of women who took it.

The study suggests that one in 50 DES daughters had the chance of developing breast cancer due to their DES exposure.
Read more about DES and breast cancer risks.

More DES DiEthylStilbestrol Resources

The DES Paper 40th Anniversary – Dr Arthur Herbst

The University of Chicago, 17 May 2011

Commemorating Arthur L Herbst and the 40th Anniversary of His Landmark DES Paper.

More DES DiEthylStilbestrol Resources

The DES Story, Lessons Learned

National Cancer Institute, October 2011

Dr. Robert Hoover, director of NCI’s Epidemiology and Biostatistics Programme, discusses a new study of diethylstilbestrol (DES), a drug once prescribed to pregnant women. Dr. Hoover describes the history behind DES and the long-term health effects that are now known to be associated with prenatal exposure to the drug. A written article about the study appears in the NCI DES follow-up study.

More DES DiEthylStilbestrol Resources

SlideShow DES Books

Not just public health books but real stories of a tragedy experienced by million of men and women…

DES Books

DES Voices

 

The FlickrDES Booksphoto set features front cover images of a selection of books and publications in English and French about the adverse effects of Diethylstilbestrol, the synthetic oestrogen prescribed to millions of pregnant women around the world decades ago in the mistaken belief that it would reduce the risk of complications during pregnancy.  Below is a short introduction presenting these books:

BOOKS AND PUBLICATIONS IN ENGLISH

books about diethylstilbestrol image

Toxic Bodies: Hormones Disruptors and the Legacy of DES – Author Nancy Langston, published in 2011

In this gripping exploration, Nancy Langston shows how these chemicals have penetrated into every aspect of our bodies and ecosystems, yet the U.S. government has largely failed to regulate them and has skillfully manipulated scientific uncertainty to delay regulation. Personally affected by endocrine disruptors, Langston argues that the FDA needs to institute proper regulation of these commonly produced synthetic chemicals.

AFSSAPS DES Report – Author French Agency for the Safety of Health Products (AFSSAPS), published in 2011

As a result of a survey conducted in 2010, AFSSAPS decided to publish a DES update aimed at DES exposed individuals and health professionals. The publication emphasizes the gynecologists and obstetricians’ crucial role in recognizing DES exposure, informing their patients about its consequences and referring them to specialists for adequate care and monitoring. It also highlights the crucial role of DES patients in handing down the “record” of their exposure to the next generations. The AFSSAPS report is available to download in English and French.

Origins, How the Nine Months Before Birth Shape the Rest of Our Lives – Author Annie Murphy, first published in 2010

The book’s most chilling section involves the tragic results of thalidomide and diethylstilbestrol (DES), two drugs from the 1950s that were “given to pregnant women in the belief that the fetus would be unaffected.” Ms. Paul reveals six decades later: “It is evidence of the evolving state of our knowledge that the mechanisms by which these substances do their damage are not completely clear, even now.”

DES Voices, From Anger to Action – Author Pat Val Cody, published in 2008.

“Take a new estrogen promoted by the pharmaceutical companies. Add doctors ready to believe in another miracle drug. Take post-World War II women desperate to have a baby after miscarrying. Continue prescription for years. The result is the tragedy experienced by million of DES-exposed mothers, daughters, and son – and perhaps grandchildren. This is the story of what they did about the drug disaster that changed their lives.”

DES Stories, Faces and Voices of People Exposed to Diethylstilbestrol – Author Margaret Lee Braun, Theo Colborn and Nancy M.Stuart, first published in 2001

A tribute to the millions of lives upended by exposure to DES, diethylstilbestrol, synthetic estrogen, toxic chemical, and carcinogenic prescription drug. In photographic portraits and interviews, DES daughters, mothers, and sons tell, in their own voice, what it’s like to be DES-exposed. Today the DES story continues to unfold as research brings new findings to light. DES Stories rings with daring honesty—and points to broader concerns about the effects of endocrine-disrupting chemicals.

To Do No Harm: DES and the Dilemmas of Modern Medicine – Authors Dr. Apfel and Dr. Fisher, first published in 1985

In this important book, Drs. Apfel and Fisher demonstrate how explosive technological advances, physicians’ unconscious fantasies of heroism, and the urging of patients, among other factors, combined to produce the DES disaster-a massive tragedy that could occur again in any area of medicine.

DES Diethylstilbestrol – New Perspectives – Author David A. Edelman, first published in 1986

“An important contribution to the understanding of the uses of DES by pregnant women and the risks associated with this use. It is the only book on this subject that provides a scientifically objective overview and should be read by all who are involved in the debate over the effects of in utero DES exposure, including those men and women who were unfortunately exposed to the drug” American Medical Writers Association, July 1987.

BOOKS AND PUBLICATIONS IN FRENCH

Distilbène: des Mots sur un Scandale – Auteurs Véronique Mahé, publié en 2011

On estime le nombre de victimes du DES à 360 000 en France. Préfacé par Marie Darrieussecq, marraine du Réseau D.E.S. France, ce livre donne la parole aux femmes et aux hommes – mères et pères, filles et fils, compagnons – qui vivent les douloureuses conséquences de ce scandale médical, pour faire entendre leur souffrance et leur colère

DES (Distilbène – Stilboestrol): Trois Générations Réalités Perspectives – Auteur Anne Levadou, publié en 2010

Book presented by the support group Réseau D.E.S. France presenting texts from speakers of the DES symposium organized in France in November 2010.

Moi, Stéphanie, fille Distilbène –  Auteur Stéphanie Chevallier, publié en 2010

Stéphanie Chevallier est présidente de l’association des “Filles DES”. Elle est aujourd’hui l’heureuse maman d’un petit garçon adopté au Vietnam et poursuit son combat au nom des victimes du Distilbène grâce à son important rayonnement médiatique (elle est apparue dans Libération, Le Monde, etc…). Ce livre est son histoire et son combat contre l’ignorance face au DES.

Le Distilbène Trente Ans Après – Auteur Bernard Blanc, publié en 2008

Cet ouvrage est le fruit de la collaboration de plusieurs experts reconnus pour leur compétence dans ce domaine. Il intéressera tous les gynécologues obstétriciens, les urologues, mais aussi les médecins de santé publique et les sages-femmes.

Saskia ou le deuil d’un bébé Distilbène – Auteur Anne-Marie Lof, publié en 2000

Ce livre est le récit poignant d’une mère qui, sans le savoir, attend un « bébé Distilbène », du nom de ce médicament que l’on a donné aux femmes contre les nausées. Or, les filles des mères « contaminées » ont une propension aux fausse-couches et à d’autres pathologies. A partir de ce drame, Anne-Françoise Lof écrit un récit poignant dont le point de départ est la « non-existence » de l’enfant qui n’étant pas né, ni déclaré civilement, est tout de même né, même s’il était mort, une vraie personne, avec un vrai deuil, un vrai enterrement, une vraie souffrance. Elle s’appelait Saskia.

More DES DiEthylStilbestrol Resources

DES Daughter on Technorati

Technorati (with name coming from “Technology” and “Literati” – technological literature intelligence) is an Internet search engine for searching blogs and/or posts by tag or keyword. In addition to this, each of Technorati channels have a variety of feature columns that cover specific niches of the blogosphere and news.

DES Awareness on Technorati

Technorati image
DES on Technorati

Our two blogs have been accepted: