The next big thing is Judith Barrow’s new book called “Silent Trauma”, a fiction built on fact around the DES story – Four women fight back, leading the way for other women …
Faces and Voices of People exposed to Diethylstilbestrol
Faces and Voices of People Exposed to Diethylstilbesterol
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.
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…
Embodied Knowledge and the Transformation of Women’s Health Politics
In DES Daughters, Susan Bell recounts the experiences of this generation of DES-victims. In moving, heartfelt narratives, she presents the voices of those women who developed cancer, those who were cancer-free but have concerns about becoming pregnant, and those who suffered other medical and/or reproductive difficulties.
What Bowdoin Books says
” Susan Bell’s book tells a story about women who attained legendary status in the annals of medicine. They were exposed prenatally to what was promoted as a benign and exciting new wonder drug prescribed to millions of American women to prevent miscarriage from the 1940s to the 1970s. This new reproductive technology—the synthetic estrogen DES— proved to be ineffective in preventing miscarriage, and in the long run it has had profound and damaging consequences for children, especially daughters of the women for whom it was prescribed (Dieckmann et al. 1953; Giusti, Iwamoto, and Hatch 1995). In 1971, medical scientists observed an association between prenatal exposure to DES and a rare form of vaginal cancer (clear cell adenocarcinoma) in women under age twenty; using available medical categories, they identified this synthetic estrogen as the first “transplacental carcinogen” (Herbst, Ulfelder, and Poskanzer 1971). “DES Daughters”, as these women are now called, are also at risk for poor reproductive outcomes, including ectopic pregnancy, miscarriage, premature birth, and stillbirth (Giusti, Iwamoto, and Hatch 1995). Almost forty years later, DES-related cancer remains rare, but reproductive tract problems—including menstrual irregularities, poor reproductive outcomes, and structural or cellular anomalies—are common among DES Daughters. ” Sources: Bowdoin Books
Not just public health books but real stories of a tragedy experienced by million of men and women…
DES Books
The Flickr “DES Books” photo 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:
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.
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.
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
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.
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.
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