Because Social Media increases Awareness and brings the DES Community Together
Le Monde, vidéo publiée le 12 juillet 2017
Ils sont partout ! Comment perturbent-ils ?
Vidéo Le Monde, publiée le 12 juillet 2017
Collaborative on Health and the Environment Webinar, 20 March 2019
Dr. Marianthi-Anna Kioumourtzoglou, Assistant Professor in the Department of Environmental Health Sciences at Columbia University Mailman School of Public Health, describes the study Association of Exposure to Diethylstilbestrol During Pregnancy With Multigenerational Neurodevelopmental Deficits design, statistical analyses, and findings.
Aattention-Deficit/Hyperactivity Disorder Much More Common in Grandchildren of Women Who Were Prescribed the DES Drug in Pregnancy
A cohort study – Association of Exposure to Diethylstilbestrol During Pregnancy With Multigenerational Neurodevelopmental Deficits – published May 21, 2018, shows that prenatal diethylstilbestrol exposure may lead to neurodevelopmental disorders across several generations : DES grandchildren are more likely to be diagnosed with ADHD (36% to 63%).
The audio summary above reviews the cohort study that uses Nurses’ Health Study data to investigate associations between diethylstilbestrol (DES) use in pregnancy and self-reported development of ADHD in grandchildren.
New England Journal of Medicine, May 3, 2018 – Supported by the National Cancer Institute, National Institutes of Health, through a cooperative agreement
A new report on the risks of exposure during pregnancy to a supplement, diethylstilbestrol (DES), that is linked to a rare cancer. The study found that DES-exposed patients with clear-cell adenocarcinoma had ‘increased mortality across their life span.’ For women aged 10 to 34 with DES-related clear-cell adenocarcinoma, the risk of death was 27 times higher than for other US women in that age group.
Women who had prenatal exposure to diethylstilbestrol (DES) are at increased risk for clear-cell adenocarcinoma of the vagina and cervix early in life. Previous studies have investigated the clinical features of this disease and survival among these patients, but data on their long-term survival are lacking. Women with DES-related clear-cell adenocarcinoma are aging into their 50s and 60s, but the effect of this condition during their overall life span has not been well established.
A total of 695 patients with clear-cell adenocarcinoma in the Registry for Research on Hormonal Transplacental Carcinogenesis were followed through 2014 (see the Methods section of the Supplementary Appendix, available with the full text of this letter at NEJM.org). The mean year of birth was 1955. The mean age at diagnosis of clear-cell adenocarcinoma was 22 years, and 80% of the patients received the diagnosis between the ages of 15 and 30 years. In 415 patients, evidence of prenatal DES exposure was documented.
During a median follow-up of 22.7 years, 219 patients died, yielding a probability of 20-year survival of 69%. The 5-year probability of survival differed between the patients with prenatal DES exposure (86.1%) and patients without documentation of DES exposure (81.2%), but the 20-year probability of survival was similar between the two groups. After adjustment for tumor stage, histologic type, and age, the difference in probability of survival between patients with DES exposure and those without DES exposure was significant only in the first 5 years (P=0.025).
Since the epidemiologic curve was similar between the two groups, some of the patients with clear-cell adenocarcinoma for whom there was no documentation of DES exposure may have actually been exposed to DES in utero, and thus the true survival difference between women with DES exposure and those with idiopathic clear-cell adenocarcinoma would be larger without potential misclassification. This differential effect of DES according to time suggests that clear-cell adenocarcinoma associated with DES exposure and idiopathic clear-cell adenocarcinoma may have different tumor biologic features. Idiopathic clear-cell adenocarcinoma may be more likely to progress quickly or recur earlier, whereas clear-cell adenocarcinoma associated with DES exposure may be more likely to recur later. This interesting phenomenon has also been observed in other estrogen-associated cancers, including breast and endometrial cancers. During the first 5 to 7 years after diagnosis, patients with estrogen receptor (ER)–negative breast cancer have a worse survival than patients with ER-positive breast cancer, but the survival rates between the two groups become similar thereafter. Data from molecular studies of germline genetic mutations, tumor genomic changes, and epigenetic alterations to elucidate the underlying mechanisms for this improved behavior of estrogen-associated cancers are lacking.
We found that patients with clear-cell adenocarcinoma had increased mortality across their life span. The risk of death among women with DES-related clear-cell adenocarcinoma was 27 times higher than that in the general U.S. population of women between 10 and 34 years of age, 5 times higher between 35 and 49 years of age, and 2 times higher between 50 and 65 years of age. The excess mortality risk between the ages of 35 and 49 years is mainly due to late recurrences, whereas the excess mortality risk after 50 years of age may be due to other life-threatening health conditions in the population of women who were exposed to DES. It is therefore important to continue the surveillance of this unique cohort of patients with DES-related clear-cell adenocarcinoma to examine their health conditions late in life.
Présentation – sous forme d’un reportage – sur le thème du distilbène, 2017
Vidéos en français: Distilbène DES : 60 vidéos à visionner sur YouTube.
Sont évoqués : trois témoignages de femmes victimes du distilbène®, les conséquences sur la santé des personnes traitées, ce que disent les recherches épidémiologiques, l’organisme en charge de la surveillance des médicaments, la reconnaissance du risque et la situation de crise sanitaire véritable.
Professeur Michel Tournaire, Réseau DES France, Forum d’Infertilité 2017
Vidéos en français: Distilbène DES : 60 vidéos à visionner sur YouTube.
Le troisième génération de victimes du médicament Distilbène® arrive aujourd’hui en âge de procréer.
Qu’en est-il au niveau de leur fertilité et risques supplémentaires en cas de grossesse ?
Le Professeur Michel Tournaire, membre du Conseil Scientifique de Réseau DES France, présente de nouveaux résultats de l’étude Distilbène 3 générations :
Enregistrement provenant de la 4ème Journée Nationale de l’Infertilité, un forum d’information et d’aide aux personnes infertiles organisé cet automne 2017, Paris 12.
Dr Anne Wautier, Réseau DES France, Forum d’Infertilité 2017
Vidéos en français: Distilbène DES : 60 vidéos à visionner sur YouTube.
Image credit @magicmaman_com.
Le Dr Anne Wautier, gynécologue médicale, aborde de façon très claire (et avec des exemples aidant à la compréhension) des notions complexes telles que : épigénétique, perturbateurs endocriniens, effets transgénérationnels du distilbene DES.
Enregistrement provenant de la 4ème Journée Nationale de l’Infertilité, un forum d’information et d’aide aux personnes infertiles organisé cet automne 2017, Paris 12.
Avec les Dr Anne Wautier et Pr Michel Tournaire, Réseau DES France
Vidéos en français: Distilbène DES : 60 vidéos à visionner sur YouTube.
Lors de la 4ème Journée Nationale de l’Infertilité, un forum d’information et d’aide aux personnes infertiles organisé cet automne, deux personnalités de l’association Réseau DES France ont partagé leur expertise.
Nos enfants sont- ils condamnés ?
RTBF Auvio, Questions à la une, 16.11.2017.
Ecoutez Tifenn, de l’association Réseau DES France, nous parler de la 3ème génération de victimes exposées au médicament distilbène, modèle de perturbateurs endocriniens.
Avec l’avènement de la chimie, les perturbateurs endocriniens ont envahi notre environnement. Ils sont partout : dans le plastique de nos cuisines, au coeur de nos ordinateurs, dans le moteur et la peinture de nos voitures, dans nos assiettes, et même dans l’air que nous respirons. Impossible d’y échapper !
Mais ces substances parasitent notre système hormonal et dérèglent notre organisme. Les scientifiques tirent la sonette d’alarme. Infertilité, obésité, trouble de l’attention, perte de mémoire et même cancer… Les pathologies qu’on attribue aux perturbateurs endocriniens explosent.
Vivre la maladie : expériences et identités contemporaines
Il y a trois facteurs importants limitant la diffusion des connaissances :
Vidéo publiée le 3 février 2015 par la chaine Paris Diderot.
Suite à leur enquête – Distilbène : quelles leçons sociologiques – menée de 2010 à 2013, Emmanuelle Fillion (EHESP) et Didier Torny (INRA), sociologues, poursuivent leurs travaux et interviennent dans différents colloques.
