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Logo of D.E.S is it, DES Action group in France (Diethylstilbestrol)
Resilience: a scientist's campaign against synthetic hormones - Marie-Odile Soyer-Gobillard's testimonial (Hhorages)

Resilience: a scientist's campaign against synthetic hormones – Marie-Odile Soyer-Gobillard's testimonial

Like many women between 1949 and 1970 (in France), Marie-Odile Soyer-Gobillard, after having a miscarriage, was prescribed a "miraculous" treatment that was supposed to guarantee the success of her subsequent pregnancies.

At that time, following the thesis of the American biologist Olive Watkins Smith, physicians were thoroughly convinced that the drop in sex hormone levels found in the urine during a miscarriage was responsible for the latter1 – thus confusing the effects with the cause – and that treating for this supposed deficiency would help women carry their pregnancy to term.

Not surprisingly, the results of Marie-Odile Soyer-Gobillard hormone testes revealed an imbalance. Thus, her gynecologist prescribed not one but three synthetic sex hormones: diethylstilbestrol (Distilbene® – French brand name of DES), ethinylestradiol (one of the components of the contraceptive pill) and a progestogen, for her two pregnancies.

She gave birth to a girl then a boy, both healthy until their late teens, when they each developed psychiatric disorders before committing suicide, three years apart. It is only much later that she made the link between the medication she had received and her children's psychiatric disorders.

From the intuition of René Alexandre to the birth of Hhorages

René Alexandre2 was a French engineer, father of three children exposed in utero to an estrogen-progestogen cocktail. He was the first to wonder about the psychiatric effects of these substances, when his children developed psychopathological episodes in adolescence before committing suicide. He then studied and collected the scientific literature on the subject and began to bring families together3. In 1998, Marie-Odile Soyer-Gobillard, in her turn, made the link between the hormone treatments she had received during her pregnancies and her children's disorders by reading the appeal to families launched by René Alexandre in the French UNAFAM magazine4.

René Alexandre and the DES mothers who had joined him submitted their hypotheses at a General Meeting of R é s e a u D . E . S ., the French DES association of the time. Within the association, no one took the work they presented seriously. Indeed, the president as well as the doctors present were not convinced of the link between DES exposure and the occurrence of mental disorders in exposed children. The president then asked them to leave the association and to create their own in order to clarify the objectives pursued by each5.

This association was nevertheless the origin of an initial research study carried out by Professor of Psychiatry Hélène Verdoux – a member of the association's scientific committee – which evoked the strong possibility of incidence between prenatal exposure to diethylstilbestrol and the occurrence of various psychic disorders and vulnerabilities, insisting however on the need for further research, in particular because the very knowledge of the exposure is likely to reinforce psychological vulnerabilities6.

After this rejection and the death of René Alexandre, Marie-Odile Soyer-Gobillard, along with four other DES mothers, decided to take up the torch. Thus, in 2002, they founded the association Hhorages-France (Halte aux HORmones Artificielles pour les GrossessES, No more artificial hormones in pregnancy in English).

A half-scientific, half-testimonial book7

This book, self-published by the association Hhorages, is divided into three main chapters. The first one is devoted to testimonies: that of Marie-Odile Soyer-Gobillard and the very immersive story of her daughter, then those of other mothers, of daughters and finally of DES sons. Some of these testimonies, all of them very interesting, are particularly moving, notably those of Ruth and Anne-Christine, which are very well written. One can also read some touching poems. If all these testimonies moved us a lot, we would have liked to find those of DES grandchildren as well. This part also deals with the history of the foundation of Hhorages.

The second chapter of the book – more scientific – relates the fight of Hhorages to demonstrate the causal link between exposure to synthetic sex hormones and psychiatric disorders, with the constitution of a cohort in 2015, then the meeting with Pr Marie-Odile Krebs, psychiatrist, teacher-researcher at the Sainte-Anne hospital Center in Paris. From their collaboration was born in 2007 a so-called ‘PICRI’ research project (Partnership Citizen Institution for Research and Innovation), financed by the French Île-de-France Region, in which the families members of Hhorages participate. Their work has borne fruit since in 2017 the research team, led by Professor Krebs, demonstrated changes in the expression of two genes in patients suffering from psychotic disorders and exposed in utero to diethylstilbestrol (Distilbene®)8. This part also talks about Marie-Odile Soyer-Gobillard's meeting with Professor Charles Sultan's team at the University Hospital of Montpellier, with whom she demonstrated the transgenerational effect of DES; The results show that the rate of hypospadias is twice as high in DES grandsons as in DES sons9.

The last chapter relates the past and current judicial history of the association, with the meeting with the judge, then lawyer, Marie-Odile Bertalla-Geffroy. The progress, but also the difficulties are explained. Indeed, and as an example, in 2007, Professor Verdoux published a second article which partly contradicted the 2000 article by concluding that there was no link10. This 2007 study, supervised by INSERM and financed by AFSSAPS, is constantly cited by the detractors of Hhorages, greatly hindering their action before the Criminal Court, even though a third study by Prof. Verdoux (resulting from a survey by R é s e a u  D . E . S . ), although more recent (2017), concludes that DES daughters were 1.7 times more likely to have consulted a mental health specialist than non-exposed women11. Discordant findings that require further research.

The author: a scientist wearing many hats

Portrait of Marie-Odile Soyer-Gobillard, Doctor of Science, cell biologist, president of the association HHORAGES, author of the book Resilience A scientist's campaign against synthetic hormones

Marie-Odile Soyer-Gobillard lives in Perpignan, France. She is Director of Research Emeritus Honorary at the French National Centre for Scientific Research (CNRS). Doctor of Science in cell biology (PH.D.), she spent her entire career at the Arago laboratory (now the Oceanological Observatory of Banyuls-sur-Mer) until her retirement in 2000. Her work focused on the cellular and molecular study of protists (single-celled living organisms).

In 2002, with other DES mothers, she founded the association Hhorages, of which she is president since 2010. The main objective of this association is to establish the causal link between the use of synthetic sex hormones during pregnancy and psychiatric disorders, whether or not associated with somatic disorders, in the exposed children.

Because she is at the same time a DES mother (and therefore a victim), a scientist who now publishes articles on DES (or related hormones) and its multigenerational effects, and the president of a DES organization, the pharmaceutical laboratories currently question her partiality, refusing to take her scientific studies into account during legal proceedings initiated by Hhorages, stubbornly preferring the 2007 study by Pr. Verdoux12.

Marie-Odile Soyer-Gobillard's book is very interesting and informative. It is published at Nombre7 éditions in both French and English. You can get the english one at:

Disclaimer: We read the French version of the book (first edition) to write this article. As the English version has more pages, there may be some differences between the two.

Notes & references

  1. Smith OW et al, Diethylstilbestrol in the Prevention and Treatment of Complications of Pregnancy, Am J Obstet Gynecol 1948.
  2. René Alexandre is sometimes called "Claude Legrand": [Online] Une mère contre le distilbène, Viva, 03-01-2011, Retrieved September, 10, 2022; [Online] Distilbène, dépression et suicides : quels liens ?, Doctissimo, 07-13-2011, Retrieved September, 10, 2022.
  3. Fillion, Emmanuelle, et Didier Torny. « Un précédent manqué : le Distilbène® et les perturbateurs endocriniens. Contribution à une sociologie de l’ignorance », Sciences sociales et santé, vol. 34, no. 3, 2016, pp. 47-75.
  4. "Un autre regard", UNAFAM, n°2, 1998.
  5. Coline Salaris. Mobilisations en souffrance : analyse comparative de la construction de deux problèmes de santé publique : (familles victimes du Distilbène et agriculteurs victimes des pesticides). Science politique. Université de Bordeaux, 2015. Français. ffNNT : 2015BORD0462ff. fftel-01278157f
  6. Verdoux, H. Quelles sont les conséquences psychiatriques de l'exposition intra-utérine au diéthylstilbestrol (DES, Distilbène) ? Annales médico-psychologiques, 2000, 158 (2), 105-117
  7. [Online] Expression used by Sophie Guégan in her testimonial "Avec le Distilbène, j’en ai pris pour perpète", Ouest France, 11-22-2021, Retrieved September, 11, 2022.
  8. Rivollier F, Chaumette B, Bendjemaa N, Chayet M, Millet B, Jaafari N, Barhdadi A, Lemieux Perreault LP, Provost S, Dubé MP, Gaillard R, Krebs MO, Kebir O. Methylomic changes in individuals with psychosis, prenatally exposed to endocrine disrupting compounds: Lessons from diethylstilbestrol. PLoS One. 2017 Apr 13;12(4):e0174783. doi: 10.1371/journal.pone.0174783. ECollection 2017.
  9. Kalfa N, Paris F, Soyer-Gobillard MO, Daures JP, Sultan C. Prevalence of hypospadias in grandsons of women exposed to diethylstilbestrol during pregnancy: a multigenerational national cohort study. Fertil Steril. 2011 Jun 30;95(8):2574-7. doi: 10.1016/j.fertnstert.2011.02.047. Epub 2011 Apr 2. PMID: 21458804.
  10. VERDOUX, H., ROPERS, J., COSTAGLIOLA, D., CLAVEL-CHAPELON, F., & PAOLETTI, X. (2007). Serious psychiatric outcome of subjects prenatally exposed to diethylstilboestrol in the E3N cohort study. Psychological Medicine, 37(9), 1315-1322. doi:10.1017/S0033291707000438
  11. Verdoux H, Devouche E, Tournaire M, Levadou A. Impact of prenatal exposure to diethylstilbestrol (DES) on psychological outcome: a national survey of DES daughters and unexposed controls. Arch Womens Ment Health. 2017;20:389-395 https://www.ncbi.nlm.nih. gov/pubmed/28064340
  12.  [Online] Hhorages-Info n°17, November 2021.

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