Gender Issues & DES

DES Action Australia-NSW has received 3 enquiries from DES sons with gender variance issues and with very heart-rending stories. With the organisation's limited media exposure and with having fielded 1500 enquiries, this does appear significant. It should be acknowledged that it also takes tremendous courage for these enquirers to phone our organisation (outside their direct care) about their situations.

We know from animal studies that DES and other oestrogens affect the development of sex-dimorphic brain structures and behaviour. Exposed to hormones in the womb at critical stages, animals exhibit behaviours of the opposite sex after birth. Researchers are starting to notice higher-than-expected rates of transgenderism in DES sons and daughters.

Scott Kerlin, of DES Sons International, has compiled Prenatal Exposure to Diethylstilbestrol (DES) in Males and Gender-Related Disorders: Results from a 5-Year Study (2005). This study shows high prevalence of individuals with confirmed or strongly suspected prenatal DES exposure who self-identify as male-to-female transexual or transgender, and individuals who have reported experiencing difficulties with gender dysphoria. Australia was included as a nation of origin in this sample study. An earlier version of this paper is found at www.antijen.org/transadvocate/id33.html

There has been no scientific literature published on this specific topic. The lack of interest/will so far is surprising in view of increased concerns about chemicals that bind to oestrogen receptors in humans and animals.

Details for DES Sons International: http://groups.yahoo.com/group/des-sons/
Reference for this blog item: The Riddle of Gender: Science, Activism, and Transgender Rights (p 16,17) 2005, Deborah Rudacille ISBN 0-375-42162-9.

As part of DES Awareness Week June1-7 in 2011, DES Action Australia-NSW sent DES information to transgender and LGBT groups and publications in Australia. As a result, it was learned that DES was also given to people undergoing sexual transition male to female. Questions have now been raised regarding possible long-term risks of this DES usage.

NOW READ ABOUT DEX
There is controversy about the off-label usage of the drug dexamethasone during pregnancy, and in particular for women at risk for having a child with Congenital Adrenal Hyperplasia (CAH). CAH can cause ambiguous genitals and atypical sex anatomy in females. Dexamethasone is thought to reduce the odds of virilisation occurring. See article http://www.theatlantic.com/health/archive/2013/01/ivf-on-steroids-the-dangerous-off-label-use-of-dex-during-pregnancy/267187/#.UPbCw9dEASQ.facebook

UPDATE 11/8/13
Listen to "Letter from a DES Survivor", by Larry Murphy, a DES Son Testimonial on @SoundCloud:
DES Son Testimonial 
   

THE MURKY PAST

The following is an excerpt from a letter by an Australian, which was quoted in the book (p152) "DES Voices: From Anger to Action" (2008) by Pat Cody:

The obs/gyns here have always maintained they know who the original prescribers were - a certain cluster of obs/gyns. In the middle of my examination, the doctor said, "Of course, Dr.G___ (the ob/gyn he names as being the main promoter of DES in Melbourne) set up the company, and most of the prescribing doctors were shareholders."

Our lawyer is sure that DES was never manufactured in Australia but imported in bulk, probably from the USA. What he calls "$2 companies" were set up that imported the raw product, repackaged and distributed it. It had never entered my head that a doctor would set up the company or that doctors would have financial interests in a particular drug. It makes so much sense, it was as if everything fell into place - that's why the doctors here have been so defensive and eager for the DES issue to die.

Details of "DES Voices: From Anger to Action" by Pat Cody can be found at blog item 23 December 2008.

REGISTER4

www.register4.org.au

Register4 is Australia's first online breast cancer research, aiming to have ONE MILLION women participants. The register encourages ALL Australians aged 18 and over, with or without breast cancer diagnosis to join as participants in providing basic information about themselves and their lifestyle. They will then be emailed about each new research project that they may be eligible to participate in.

Register4 is specifically interested in factoring in DES exposure into research questionnaires.
This approach is in keeping with the US interest shown in DES by the US online research register "Army of Women".

All Australians with known or suspected DES exposure are welcome to join in as participants in Register4.

Visit www.register4.org.au

RESOURCES

The following resources to help Australians with known or suspected DES exposure have been compiled by the organisation DES Action NSW. These resources are updated and provided routinely in the organisation's newsletter, The DESfactor. Please consider subscribing or making a donation to help this NSW based group continue its advocacy work for all Australians affected by the DES drug disaster. All help appreciated. (Details to subscribe/donate at blog item 23 April 2010)




International Resources

DES Action USA www.desaction.org
US CDC DES Update www.cdc.gov/des
DES Research Information http://www.followupstudy.org/
(UK) Diethylstilboestrol -Journal of a DES Daughter http://diethylstilbestrol.co.uk/des-daughter/
Reseau DES France www.des-france.org
DES Centrum Netherlands www.descentrum.nl
DES Sons' International Network http://groups.yahoo.com/group/des-sons/
DES Sons:General Information http://groups.yahoo.com/group/des-sons/links
DES-L Group: Online closed discussion group for DES exposed women: http://groups.google.com/group/des-l?hl=en Email:des-l@googlegroups.com 
DES Pregnancies Support www.onelist.com/subscribe/despregnancies
3rd Generation DES Exposed Support DESupport_3rdgen-OWNER@yahoogroups.com (Send name, email, gender, birth year and whether certain of exposure)
Parents of 3rd Generation DES Exposed Support DESupport_parent-subscribe@yahoogroups.com
Ireland DES Clinic: National Maternity Hospital, Holles St Dublin 2. Ph (01) 6373502 -Dr Myra Fitzpatrick

Advocates: New Zealand - Prof Charlotte Paul, Dunedin Medical School
                    Ireland - Aislinn Ni Eifearnain (Grealy), Dublin
               
Australian Resources

General Information www.cancercouncil.com.au/editorial.asp?pageid=248 , www.healthinsite.gov.au , www.betterhealth.vic.gov.au
National: Ph 03 83453045 (Royal Women's Hospital, Melb, 1800442007 for rural Vic callers)
NSW DES Action NSW www.desnsw.blogspot.com Ph 02 98754820 (national coverage)
Twitter@DESAustraliaNSW
Qld Women's Health Qld-Wide Ph 07 38399962 Toll free 1800017676
Relationships Australia www.relationships.com.au National counselling service Ph 1300 364 277 for nearest service.
Mothersafe Counselling Service (NSW) for exposures during pregnancy Ph 02 93826539 Toll free 1800 647848
TGA BLUE CARD : Forms to self-report adverse drug reactions, including DES related clear cell adenocarcinoma of the vagina/cervix and other known effects, eg, recurrent miscarriages, t-shape uterus, undescended testes. www.tga.gov.au/adr/bluecard.htm or Ph 180044114 (free call)/02 62328180.
Alternative is helpful service of Adverse Medicines Events (AME) Line 1300134237.
Forms to self-report DES related vaginal/cervical cancer to International DES Registry- Ph 02 98754820

FACEBOOKS
 DES Action USA
WONDER DRUG
DES (diethylstilbestrol) Info
Diethylstilbestrol, Journal of a DES Daughter

THE ONE TO WATCH

US screenwriter and DES daughter, Caitlin McCarthy, has been named as one of the "People to Watch in 2011" in The Pulse Magazine. This article mentions Caitlin's work with Senator John Kerry and Senator Scott Brown to get an apology from the US Food and Drug Administration for the DES drug disaster.
Check this out at www.thepulsemag.com/wordpress/2011/01/111-people-to-watch-in-2011

Our Numbers Go Higher

There is now Australian Institute of Health & Welfare data for 2006- 2007 showing a further 8 cases of clear cell adenocarcinoma of the vagina/cervix in the general population. To make the previous estimate for DES exposure in Australia more up to date and more meaningful, an average projected case figure (average 5 cases per year) has also been added in the calculation.

Up to year 2010 there is estimated 168,000-740,000 DES exposed mothers, daughters and sons in Australia.