Thursday, 29 May 2014











Hunt for a DES drug Biomarker gives hope for 
DES exposed Australians


US researchers from the National Cancer Institute are on the hunt for a biomarker to prove prenatal exposure to the anti-miscarriage drug DES (diethylstilboestrol). Using advanced scientific tools and blood donated by recruits from the National Cancer Institute's DES Follow-up Study, it is hoped a biomarker will be discovered by early next year to identify people exposed to DES in the womb.

"A simple blood test to prove DES exposure in the womb would help many Australians previously uncertain of DES exposure to determine their need for special health care," says Carol Devine, coordinator of the support advocacy group DES Action NSW.

"So far successive governments have refused to promote the DES topic directly to the Australian public in health promotion programs due to concern about raising anxiety in people uncertain of DES exposure."

"But this has meant neglecting the rights of all Australians to be informed of the possibility of DES exposure, with the majority of DES exposed people suffering DES effects without knowing why and what they can do about it," adds Devine.

DES was prescribed worldwide to over ten million pregnant women over three decades to prevent miscarriage. In the early 1970s it was linked to clear cell adenocarcinoma of the vagina/cervix in women exposed to DES in the womb. It is now known to cause reproductive problems in DES-exposed offspring and increased risk of breast cancer in women given DES during pregnancy and their daughters of that pregnancy. People exposed to DES during pregnancy and in the womb require lifelong specialised vital health care to help detect DES associated cancers early. DES Action NSW estimates about 740,000 Australians have been exposed to DES.

For DES Awareness Week June 1-7, as well as assisting people learning about their DES exposure for the first time, the DES Action group will be spreading the hopeful news of the DES drug biomarker research. During the Awareness week, June 7 will be set aside to reflect on those who have lost their lives due to DES exposure.

More information about DES can be found at DES Action NSW website:  www.desnsw.blogspot.com and on the Cancer Council website at: http://www.cancercouncil.com.au/880/news-media/get-the-facts/cancer-prevention-get-the-facts/cancer-council-new-south-wales-diethylstilbestrol-des-and-cancer/ or by phoning DES Action NSW 02 98754820.

-END-
Information sources:
http://us5.campaign-archive2.com/?u=317818521a5c55131fb1beaf1&id=33b47bfd59&e=a002bf1fe2
http://dceg.cancer.gov/about/staff-directory/biographies/O-Z/hoover-robert
http://www.desfollowupstudy.org/index.asp
Correspondence: Dr Michael Wooldridge 12/10/99, Minister for Health and aged Care (regarding community anxiety with DES exposure information)
For more information or interviews, contact:
Carol Devine
E: c_devine@bigpond.net.au
P: 02 98754820

Wednesday, 9 April 2014


MEDIA ALERT
9th April 2014

Indian website promotes dangerous DES drug


Shock waves were sent through the Australian group, DES Action NSW last week when its members discovered that DES (diethylstilboestrol) is currently listed for usage in pregnancy on the Indian website Medindia. This discovery supports what the DES Action group has both feared and suspected about this cancer-causing drug since receiving anecdotal stories in the 1990s of its continued usage in pregnancy after it having been contraindicated from this usage some twenty years earlier.

DES was prescribed worldwide to over ten million pregnant women over three decades to prevent miscarriage. In the early 1970s it was linked to clear cell adenocarcinoma of the vagina/cervix in women exposed to DES in the womb. It is now known to cause reproductive problems in DES-exposed offspring and increased risk of breast cancer in women given DES during pregnancy and their daughters of that pregnancy. People exposed to DES during pregnancy and in the womb require lifelong specialised health care.

"In the 1990s we received word from some south-western Sydney doctors and doctors from overseas studying at University of NSW that DES was being prescribed in pregnancy in Pakistan, Bangladesh, and Sri Lanka," says Carol Devine, DES Action NSW coordinator. "No words can describe the shock these doctors felt when learning from us for the first time about harm caused by DES, whilst having knowledge that DES was being prescribed during pregnancy in their respective home countries," says Devine.

Medical experts at a 1992 symposium in Sweden made calls for measures to address the continued usage of DES in pregnancy in many parts of the world, including East and Central Europe, Africa, Asia and Latin America. However, it is unclear what actions ensued. The DES Action NSW group is now urging women who may have been given DES during pregnancy in India or any doctors with knowledge of this usage to report this to government medical authorities in India.

The DES Action group is concerned that there may even be women or doctors from India now living in Australia who have information on this to report. The group is interested in hearing from these people.

"The apparent inertia in dealing with continued DES usage is tragic, and in retrospect it should have always been incumbent on governments worldwide to issue frequent warnings about the danger of DES," comments Devine.

More information about DES can be found at Cancer Council NSW and the contact for DES Action NSW is 02 9875 4820/c_devine@bigpond.net.au

-ENDS-
References:
http://www.medindia.net/drugs/medical-condition/Miscarriage.htm (DES indicated for usage during pregnancy to prevent miscarriage)
http://www.medindia.net/doctors/drug_information/diethylstilbestrol.htm (DES usage is indicated in pregnancy and then its listing as contraindicated creates confusion)
http://desnsw.blogspot.com.au/2009/04/real-multicultural-affair.html

Monday, 11 November 2013

Macquarie University does DES

  The Macquarie University student publication "Grapeshot" - Issue 8, 2013 has an article about DES on page 9! Fingers crossed this will create waves of academic interest. For a clear view, click onto DES Carries On



 

Friday, 4 October 2013

Mental Health of DES Daughters & Sons












A 9-year comprehensive study by French researcher, Marie-Odile Soyer-Gobillard has revealed a link between DES and mental health issues in DES daughters and DES sons. The study involved the hormones DES, 17-alpha-ethinylestradiol (synthetic EE) and synthetic progestin. A report in 2011 stated DES was often in a cocktail with EE and progestin.

Gobillard's study is not epidemiological, but rather provides a database for further research. It is interesting to note that in three previous epidemiological studies about the link between DES and psychiatric disorders, two favour the hypothesis of a causal link and one reaches a different conclusion.

Psychiatric disorders found by the Gobillard study were: Alcohol addiction, learning disorders, eating disorders, behavioral disorders (aggressiveness, impulsivity), sleep disorders, anxiety disorders, mood swings, major depressive episodes, bipolar disorders, personality disorders, schizophrenia, acute psychotic episodes, series of suicide attempts, and suicides. Across all synthetic oestrogens, girls were observed to be more vulnerable than boys for both somatic and psychiatric disorders.

In figures as of April 2012, Gobillard has revealed some disturbing statistics involving the mental health of 1676 DES daughters and DES sons. Of those exposed to DES in the womb, 1334 had reported psychiatric disorders. Of these Gobillard identified 128 attempted suicides and 48 suicides.

The above findings give rise to questions among DES Action groups. A link of this kind would easily go unnoticed, since previous emphasis has been on physical effects. Additionally there would be stigma felt by people experiencing psychological disorders, enough to dissuade their reporting these conditions to Action groups.

Links for more information:

Behavioral and somatic Disorders in Children Exposed in Utero to Synthetic Hormones, by #Hhorages

Behavioral and Somatic Disorders in Children Exposed in Utero to Synthetic Hormones: A Testimony-Case Study in a French Family Troop

by Marie-Odile Soyer-Gobillard, Charles Sultan (2012), Dr. Sameh Magdeldin (Ed.), ISBN: 978-953-51-0772-9, InTech, DOI: 10.57772/48637.
http://www.intechopen.com/books/state-of-the-art-of-therapeutic-endocrinology/behavioral-and-somatic-disorders-in-children-exposed-in-utero-to-synthetic-hormones-a-testimony-case



14th October 2013

Anti-Miscarriage drug linked to mental health problems


 A recent French study has linked the anti-miscarriage drug, diethylstilboestrol (DES) with psychiatric disorders in the children exposed to the drug in the womb. Researcher, Marie-Odile Soyer-Gobillard, has revealed serious psychological side effects in "DES daughters" and "DES sons", with a worryingly high incidence of attempted suicide and suicide.

An estimated 740,000 Australians have been affected by DES, which was prescribed to pregnant women between 1940 and 1971 (and sometimes beyond). DES causes reproductive problems and an increased risk of certain cancers (breast, cervical and vaginal) in those women given DES and their children of that pregnancy.

In a familial case control study by Soyer-Gobillard, a range of psychological disorders are reported across exposed and non-exposed groups, which include eating disorders, sleeping disorders, anxiety disorders, major depression, bipolar disorders and schizophrenia. Out of 1676 DES daughters and DES sons, 1334 reported psychiatric disorders, with 128 attempted suicides and 48 suicides. In terms of both psychological and somatic disorders, DES daughters suffered more than DES sons.

"These disturbing study results have opened up a whole new area of concern to us," says Carol Devine, coordinator of DES Action NSW. "Emphasis has always been on physical effects of DES exposure, and then coupled with the stigma felt by people in mentioning mental health problems, it is no wonder this link has gone unnoticed," adds Devine.

Over 10 million people were exposed to DES worldwide and many people remain unaware of their exposure to DES and the potential adverse health effects of DES. People exposed require vital special health care. In Australia there has been no promotion of DES information in public health programs due to concern this may create community anxiety. People can find out about DES at www.desnsw.blogspot.com or by phoning DES Action NSW 02 98754820.

HEALTH CHECK LIST: If you tick 'yes' to any of the following, ask your doctor about possible exposure to DES:
  • Does your mother recall having previous miscarriages or being prescribed medications while pregnant? DES was most commonly prescribed to prevent miscarriage and for pregnancy complications such as bleeding. It was also known as "stilboestrol".
  • If unable to ask your mother, does your health history show a series of reproductive problems such as cancer, difficulty in getting pregnant or carrying a pregnancy to term or near term, ectopic (tubal) pregnancy, miscarriages or premature deliveries?
  • Does your mother remember only being given "hormones" during pregnancy? It is worthwhile having a check-up, informing the doctor your mother was given hormones during pregnancy. Progesterone, another hormone, may have also been used to prevent miscarriage and research has shown no problems with this.
 -ENDS-

Information sources:
 http://www.intechopen.com/books/state-of-the-art-of-therapeutic-endocrinology/behavioral-and-somatic-disorders-in-children-exposed-in-utero-to-synthetic-hormones-a-testimony-case

http://www.cancercouncil.com.au/880/news-media/get-the-facts/cancer-prevention-get-the-facts/cancer-council-new-south-wales-diethylstilbestrol-des-and-cancer/

For more information or interviews, contact:

Carol Devine
E: c_devine@bigpond.net.au
P: (02) 98754820

Tuesday, 3 September 2013

DESperately seeking celebrities

In June this year, US model, actress and billboard recording artist Amy Weber opened up with her story on the TV program The Doctors about her experience as a DES daughter. Amy describes her struggle to become a mother after undergoing treatment for cervical cancer. In May 2009 Amy was finally able to fulfill her dream of becoming a mother.

As a result of Amy's very brave testimony, many thousands of TV viewers will learn about DES. If individuals know or suspect DES exposure, they will hopefully be able to navigate their way to find accurate information, such as what DES Action groups provide. No doubt Amy's actions will help many DES affected, including those who up until now have been unaware of the harm caused by DES and the special vital health care they need. We owe huge thanks to Amy!

Australia DESperately needs someone too, with the likes of Amy Weber, to bravely showcase their DES exposure experience in the Australian media. We wait and wish Down Under for this to happen.

Viewers can see here what Amy went through during her high-risk pregnancy, and meet her family!
 

Saturday, 3 August 2013

Australian Senate on DES


The Senate has responded to 27 questions in relation to the Australian DES exposure problem. You will find the questions and response at: Senate on DES


Questions were not painstakingly answered and various aspects were ignored, eg,
  • that many people remain unaware of their exposure to DES and the potential adverse health effects 
  • the question of how the department is measuring the effectiveness of DES information on departmental and a number of medical websites.

Thursday, 1 August 2013

New Name New Logo

To assert our independence and to avoid being mistaken as a branch of any other DES Action groups in Australia, we have changed our name to DES ACTION NSW. The group's new logo, using gender-neutral orange colour, symbolically depicts the DES theme. The white "DES" circle within the orange circle represents DES in the womb. The three smaller circles represent subsequent generations. A brilliant and fresh-looking design for such a complex issue!