Tag: AFFSSAPS

Read all “AFFSSAPS” related posts published by Diethylstilbestrol “Journal of a DES Daughter”; a blog updated weekly about DES and its consequences.

Posted on

New AFSSAPS DES survey and update

AFSSAPS DES survey and update offices image
AFSSAPS offices - 2011 DES survey and update

Between 2010.09.10 and 2010.10.10, the National French Agency for the Safety of Health Products (AFSSAPS) conducted a DES survey aimed at assessing the knowledge of gynecologists and obstetricians regarding the complications associated with Dietylstilbestrol exposure as well as evaluate their expectations in terms of information campaign about this issue.
This survey was conducted in collaboration with the French National Federation of Medical Gynecology Colleges, the National College of French Gynecologists and Obstetricians, and the French Company and Gynecology Group for the Study of In vitro fertilization in France.

A total of 204 completed questionnaires were returned. Gynecologists who responded were generally aware of the consequences of DES exposure with 71% of them having at least one patient exposed to Diethylstilbestrol in utero.

AFSSAPS DES survey results

Analysis of the responses regarding the level of knowledge about DES exposure suggested that:

  • A majority of practitioners have an imperfect / limited knowledge of its consequences
  • Investigating DES exposure in situations which suggests potential exposure is not systematic
  • Genital anatomic abnormalities in boys exposed in utero are not well known by gynecologists
  • Knowledge of the risks faced by the third generation is very limited, yet it is important to continue monitoring these children to assess the multi-generational effects
  • The “memory” of the consequences of DES exposure is lost with the new generation of doctors
  • Recent data on the third generation is largely unknown
  • Almost half of the practitioners who responded requested a new DES information campaign

AFSSAPS DES update June 2011

As a result of the 2010 survey, AFSSAPS decided to publish a DES update aimed at DES exposed individuals and health professionals. The publication released in June 2011 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 2011 DES update covers the following topics:

  • DES historical facts
  • Current issues
  • Risks associated with DES exposure
  • Breast cancer risks
  • Post adolescent psychiatric disorders – Later this year AFSSAPS plans to conduct a public hearing for experts to reexamine their facts on this matter.
  • Risks for the 3rd generation
  • How to screen DES exposure
  • Routine medical follow-up
  • Recommendations for fertility problems
  • DES pregnancy care

As a DES daughter and mother of 3 girls who may also be affected (only time will tell …), I really welcome these efforts from AFSSAPS and I believe this is a very important document which will serve as a reference for years to come. The results of the survey and the update are available to download from the AFSSAPS website in French. AFSSAPS is circulating this information through professional organisms to reach out to health professionals.

I sincerely hope AFSSAPS and the French government will follow through with additional efforts to spread the word, and reach out not only to all doctors, but also to the general public. With the recent Mediator scandal maybe AFSSAPS doesn’t want to make too much noise about the DES tragedy but at the end of the day it is our health and our children health which are at stake and we have the right to know.

AFSSAPS Downloads

English AFSSAPS DES report 2011 image
Download the 2011 AFSSAPS DES report
AFSSAPS DES report 2011 image
Téléchargez le rapport AFSSAPS 2011

The AFSSAPS DES Update 2011 was promised by one of their doctors who attended the DES conference in Paris in November 2010. It is very widely based on the Réseau DES France publication which followed the conference. It is an official text for gynecologists, obstetricians and doctors. The English translation has been coordinated by Réseau DES France and reviewed by Carol Devine (DES Australia NSW), Pr Tournaire and myself.

Thanks go to Pam Solere for her trust and encouragements.

Posted on

French study reveals more damaging DES side effects

Diethylstilbestrol (Distilbène), the synthetic sex hormone prescribed in France up to 1977 (and in many other countries under different names) to pregnant women to prevent miscarriage and premature labour, has caused genital abnormalities, infertility problems, and cancer in children exposed in utero to the drug. A new report reveals that DES may have done even more damage, often associated in cocktail with other estrogens as 17-alpha Ethinyl oestradiol (synthetic EE) or with synthetic Progestin.

Distilbène® DES psychiatric disorders image
Click to watch the M6 Actu DES news in French

A disturbing study conducted since 2004 by Marie-Odile Soyer-Gobillard, former director emeritus at the CNRS (French National Center for Scientific Research) reveals a link between DES and mental illness issues. In January 2011, and next in October 2011, 6 members of the association Hhorages (Halt to Synthetic Hormones for Pregnancies), of which Marie-Odile is the president, were received by the AFFSSAPS (the equivalent of the Food and Drug Administration in the U.S. now named AFSM, French Agency for Medicament Security) to discuss her findings. A working group composed of experts from the agency and the association will now be formed in April.

DES Psychological Side Effects New French Stats

So what does the French study (published in the International Journal “Medicine and Longevity*) reveal? Marie-Odile sent questionnaires to 529 DES mothers and studied a group of 1180 children of which 740 have been exposed to DES in-utero. Of this group, 15 were still born and 684 suffer from psychiatric disorders and / or physical malformations while 41 were not ill. Amongst the studied population, the psychiatric illnesses are essentially depression, anorexia, schizophrenia, …). Today, Hhorages tots up 1223 testimonies representing 1223 mothers with a total amount of 2674 children. Amongst them, 1676 were in utero exposed to synthetic hormones, 1549 exposed children are ill: amongst them: 916 present psychic diseases « only », 448 present somatic and psychic diseases , 183 present somatic diseases « only »; 126 exposed are not ill. Amongst the observed siblings in the same family, only those who have not been exposed to DES in-utero, don’t show signs of psychiatric disorders …. Could this be just a coincidence?

Another shocking statistic: of all the cases reported since 2004, when the study started, Marie-Odile identified 150 suicide attempts series and 48 suicides. In some families, 2 or 3 children have ended their lives leaving their parents with a profound sense of guilt. Amongst the observed siblings in the same family, only those who have not been exposed to DES in-utero, don’t show signs of psychiatric disorders… Could this be just a coincidence?

Herself DES mother, Marie-Odile Soyer-Gobillard has been fighting since 1998 for the recognition of the link between synthetic sex hormones taken during her pregnancy including Distilbène®, and the psychological disorders of her own children, Nicolas and Valerie, who both committed suicide three years apart in 1995 and 1998 at age 28 and 27. She founded the association Hhorages with 3 other mothers in 2000 to raise awareness of the risks synthetic sex hormones prescribed during pregnancy pose on children born from these pregnancies.

According to Fran Howell (Executive Director DES Action USA), American researchers have been having trouble finding a solid link between DES and mental illness issues, except depression. But through the years DES Action USA have heard many reports of DES-exposed individuals suffering with psychological issues.

Pat Cody, co-founder of DES Action USA, wrote in the spring 2005 issue of VOICE (DES Action Newsletter) about why it is difficult for researchers to study these questions and develop definitive answers: “Here, some of the difficulties in getting a valid study are caused by a wide spread in the DES dosages mothers got, in the time in pregnancy when they got it, and for how long they took it (…). Sex hormones are, however, known to have effects on the organization of the brain in experimental animals with consequential behavioural effect”.

Distilbène® DES psychiatric disorders image
Click to watch the M6 Actu DES news in French

A 2005 study carried out by Professor Caston, a neurologist at the University of Rouen (France), has demonstrated that rats born to mothers treated with synthetic sex hormones developed anxiety and depressive behaviour. “These results could be explained by the effect of the molecule on the part of the brain involved in emotional processes, which is under development in foetuses”, the report says.

Could all the known DES side effects which have destroyed the lives of many DES mothers, daughters, and sons, just be the top of the iceberg? Already concerns for the grandchildren of DES mothers arise with a higher risk of hypospadias (misplaced opening of the penis) in sons of DES daughters. If more DES side effects are scientifically validated, DES could well be a real time bomb!

I welcome Marie-Odile’s research study and thank her and Hhorages for their combat and work on behalf of all the DES victims who suffer from the mental side effects of this drug.

More research is critically needed not only to provide DES-exposed individuals with appropriate care and support but for the next generation and all the people who may continue to suffer from the physical or mental consequences of this drug in the future. Please support Hhorages and your local DES Action group, and stay tune for more revelations about DES exposure and its devastating side effects.

Sources:

  • DES Action USA Voice newsletter spring 2005
  • DES Action USA
  • Viva Presse.fr
  • M6Bonus.fr
  • Hhorages.

Notes:

*Soyer-Gobillard, M.O. 2011. Endocrine disrupters and effects on behavioral disorders: No, we have not as yet learnt all our lessons concerning the DES story. Médecine et Longévité, (Elsevier Masson), 3, 67-74.
** Nicolas Kalfa, M.D., Ph.D,.Francoise Paris, M.D., Marie-Odile Soyer-Gobillard, Ph.D., Jean-Pierre Daures, M.D., Ph.D. and Charles Sultan, M.D., Ph.D. Prevalence of hypospadias in grandsons of women exposed to diethylstilbestrol during pregnancy: a multigenerational national cohort study. Fertil Steril, 2011, 95, 2574-2577(published by American Society for Reproductive Medicine).