For the past five years we have held the event DES Awareness Week on the Federal and State Health Calendars. This event involves sending media releases and constant messaging to over 1,000 media sources (print, radio, TV). Every year we have a wonderful team of volunteers from different localities across Australia ready to tell journalists a little about their own experience with DES exposure for articles about DES in their own local newspapers. Having articles personalised in this way certainly helps raise interest by media in running the DES story. Here are examples of media interest in DES Awareness Week 2010:
Listen to the ABC Radio Canberra 4/6/10 podcast
hereMacedon Ranges Telegraph VIC 1/6/10
www.macedonrangestelegraph.com.au/news/local/news/general/drug-that-destroyed-many-lives/1845176.aspx?src=rssMaitland Mercury NSW 2/6/10
www.maitlandmercury.com.au/news/local/news/general/mum-daughter-raise-awareness-of-drug/1847036.aspx
We are always looking for volunteers to help us cover the whole of Australia. If you are DES exposed, are able to share some of your story and would like to join our great volunteer team in spreading the message about DES, we would love to hear from you now - contact 02 98754820 or email c_devine@bigpond.net.au
.........and there's more.........
EASYMIX 1467AM Mildura Radio Victoria ran the following:
Health check - Are you affected by DES?www.easymix.com.au/mildura/index.php?option=com_content&view=article&id=44056:health-check-are-you-affected-by-des&catid=43:local-newsroom&Itemid=86Tuesday, 15 June 2010 09:56
Australian women and men are being urged to ask their mothers and grandmothers if they took the anti-miscarriage drug DES (diethylstilboestrol or "stilboestrol") as part of this year's DES Awareness Week. It is estimated that 160,000 Australians may be affected by this drug, many of whom are unaware of their exposure and its health risks.
Asking this one simple question could save lives as many Australians still have not heard about DES, an anti-miscarriage drug prescribed in good faith to pregnant women between 1940 and 1971 (and sometimes beyond). Problems first arose with this drug in the 1970s. It is now known to increase risks in certain cancers (breast, cervical and vaginal) and cause reproductive problems in those women given DES and their children of that pregnancy. Many people remain unaware of their exposure to DES and yet, it is vital that people affected get the specialised health care they need. It is important that DES exposed women get the proper screenings to detect cancers early and women exposed to DES in the womb have "high risk" care during their pregnancies. Men exposed to DES in the womb can be affected too, with increased risk of genital abnormalities. They should do self-checks regularly and report anything unusual to their doctors.
Carol Devine, DES Action Australia-NSW coordinator, herself a DES daughter, is pinning her hopes on a feature film now under development in USA by screenwriter, Caitlin McCarthy, called "Wonder Drug", a scientific drama about the DES tragedy.
"Raising conversation about the medical history of your mother or grandmother in relation to DES can be difficult, especially when exposure to this drug could involve the health of a loved one. I hope that when this film comes to Australian cinemas, it will encourage families to talk about DES, or trigger a memory for mothers who were prescribed DES from 1940-1971 (and some cases beyond)," she said.
Dr Jules Black, DES knowledgeable obstetrician and gynaecologist and medical spokesperson for the DES Action group, urges women, who have health histories suggestive of DES exposure, eg, recurrent miscarriages, t-shape uterus, ectopic (tubal) pregnancies and infertility to seek DES information and to visit their doctors. Women can ask for an assessment of DES exposure probability and possible referral to a DES knowledgeable specialist.
"Taking DES information along to appointments is very helpful, so that health professionals understand that special cancer preventive care for DES exposed women is important and should be life-long," says Dr Black. "As a result of case reports of DES associated cervical and vaginal cancer in women exposed in the womb in the 50s age group, there is concern for a possible increase in cases as these women get older," adds Dr Black.
The estimate that at least 160,000 people are exposed to DES in Australia is a conservative figure calculated from available data.
People can find out about DES and see the articles about Wonder Drug at
www.desnsw.blogspot.com . The website has a listing of DES knowledgeable health care providers in Australia. Information and support is available by phoning DES Action Australia-NSW 02 98754820.
Are you DES exposed?
If you were born between 1938 and 1971 (and in some cases beyond), here is how to find out:
- Ask your mother if she recalls having a previous miscarriage or being given medications while pregnant. DES was most commonly prescribed to prevent miscarriage and for pregnancy complications such as bleeding. It was also known as "stilboestrol". DES mothers sometimes experience guilt feelings, but should be assured they did what they thought best to preserve their pregnancies and what was the accepted medical standard at the time. DES was also used to stop breastfeeding after giving birth and in the latter years of DES usage, another hormone called progesterone was more commonly used in pregnancy. However, these usages are not known to cause any problems. Even if your mother is no longer alive and remaining relatives offer no information, your own health history may offer clues. If you've had a series of reproductive problems such as cancer, infertility, or endometriosis, among other issues, you may have been exposed before birth.
- Do your research. If you think you have been affected by DES, ask your doctor for more information, and visit www.desnsw.blogspot.com for support and resources.
- Think about your health. Health problems associated with DES include risk for miscarriage and ectopic (tubal) pregnancy, premature delivery, infertility, undescended testicles and reproductive tract cancers, primarily of the vagina and cervix.
If you are DES exposed or suspect that you are:
- Relay this to your health care provider. DES exposure is as important to your health history as conditions like diabetes or heart problems.
- Mark your diary to have your special DES health checks.
- Keep updated and talk to your family about DES. Overseas research about DES is ongoing, so it is important for you and your family to keep informed.
DES Action Australia-NSW has made enquiries to all State Cancer Registries and found there are 20 further cases of clear cell adenocarcinoma of the vagina/cervix (CCA) reported to those Registries prior to 1982. Consequently, the estimate of the upper range figure for DES exposure in Australia has increased.
