DES Info Association:
The DES tragedy of in-utero exposure and its devastating effects on multiple generations must not be forgotten. The medical community need education about the sequela of DES Exposure. (1) know how to screen the DES exposed, (2) Know the continueing long term effects of DES exposure, and (3) Provide prompt care when DES Exposed patients develop complications.
** What is DES (diethylstilbestrol)? **
DES (diethylstilbestrol), is a teratogenic and carcinogenic synthetic estrogen (Endocrine Disruptor) , is the world’s first major drug disaster. It was prescribed to millions of pregnant women for decades: from 1938 into the 1970s in the United States; and until the mid-1980s in parts of Latin America, Europe, Australia, and the Third World (Currently in Kenya). The currently proven effects of exposure include a rare vaginal cancer in DES Daughters; greater risk for breast cancer in DES Mothers; possible risk for testicular cancer in DES Sons, along with transgender and reproductive malformations; abnormal reproductive organs; infertility; high-risk pregnancies; Skeletal issues and an increased risk for breast cancer in DES Daughters. There are a number of other suspected effects, including auto-immune disorders, but many of these effects are still awaiting further research. For decades, Big Pharma claimed DES prevented miscarriages and problem pregnancies. It was sometimes given as an injection, but primarily it was prescribed in pill form. Never patented, DES was marketed under 200 different names, although the majority of the drug was actually produced by Eli Lilly. DES was sometimes even included in prescription prenatal vitamins. As early as 1938, studies showed that DES promoted cancer in lab animals. But at that time, people thought animal studies only provided a hint of what could happen in humans. Also, no one knew that drugs could cross the placenta and affect a baby in utero. (Note there was a 1941 mouse study that showed mice with absent or deformed fallopian tubes. The warning signs were there for humans.) In 1941, the original clinical uses for DES were to treat gonorrheal vaginitis, senile vaginitis, menopausal symptoms and to suppress lactation. Between 1941 and 1947, it was used for pregnancy without FDA approval. No controlled studies were ever conducted by the drug companies to determine the effectiveness or safety of DES for use during pregnancy, even after some scientists started questioning its efficacy in the 1950s. As early as 1953, research revealed that DES did not work (The Dieckmann Study) – that DES actually brought about higher rates of premature birth and infant mortality – yet DES continued to be prescribed to pregnant women for decades. This is because pharmaceutical companies continued to heavily promote DES use to doctors. The drug was a top moneymaker for Big Pharma. In the late 1960s, there was an unprecedented appearance of rare cancer in young women. Clear cell cancer (CCA) – a rare cancer of the vagina – was diagnosed in an age group never before found to develop it. (Normally elderly women developed CCA.) There were eight such cases at Massachusetts General Hospital in Boston alone. One of the mothers raised the question of whether her daughter's cancer might be connected to DES exposure in utero. Doctors discovered the DES link in 1971 and published their findings in the April 1971 issue of New England Journal of Medicine. News of the cancer cases made national headlines. However, the FDA did not act on this information until public pressure, including Congressional Hearings, forced the FDA to issue a warning about DES in November 1971. The drug was not banned for human use. DES was contraindicated for pregnancy by the FDA in 1972. It was not until September 2000 that the FDA finally withdrew its approval of DES for humans. Researchers are now investigating whether DES health issues are extending into the next generation, the so-called DES Grandchildren (Third Generation). As study results come in, there is growing evidence that this group has been adversely impacted by a drug prescribed to their grandmothers. To this day, not one drug company has ever apologized or accepted responsibility for the DES tragedy. Nevertheless, they have paid millions in out-of-court settlements and verdicts to DES Daughters and Sons who suffered injuries from their exposure. Please join us in our mission to continue to provide information to the DES exposed on DES information and other health related information along with pushing for more physician education to know how to care for the DES exposed. Also, we are continuing to push for more research! Our moto is "Knowledge is Power" DES Info Association is a free resource for Diethylstilbestrol Information and Research
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