Over four decades the great majority of an estimated 740,000 women prescribed DES during pregnancy and their children exposed to DES in the womb have been unaware of the danger of DES. Consequently they have been missing out on information about the vital special health care for their increased risks of clear cell adenocarcinoma of the vagina/cervix (CCA), breast cancer and other reproductive problems.
"A better understanding of the DES health condition and how this issue came to fall off the radar of health authorities and medical professionals will help major women's groups realise the importance of addressing the problems experienced by the Australian DES exposed population, the majority of whom are women," says group coordinator, Carol Devine.
It is common for the group to receive phone calls from women who have suffered the effects of DES without knowing why, and are only now learning about the harm caused by DES and the rightful health care they need through the group's own media efforts. Last year the New England Journal of Medicine revealed women exposed to DES in utero are at an increased risk of at least 12 adverse health conditions - in some cases up to three times that of other women.
Researchers are still following the health of the DES exposed population to determine whether other health problems occur with age and whether subsequent generations are affected. Women's groups interested in information can contact DES Action Australia-NSW, firstname.lastname@example.org / 02 9875 4820.