Were you or your children born between 1938 and 1971? Many people are not aware that an estimated ten million Americans were exposed to the synthetic estrogen, diethylstilbestrol (DES). DES, once touted as a "wonder drug" during its heyday in the 1950s, was prescribed to pregnant women in an unsuccessful effort to prevent miscarriages and other pregnancy problems. DES was not only ineffective in preventing pregnancy problems, it caused the greatest harm to those it was supposed to protect—the unborn child.

Following the discovery of DES-related cancer in 1971, DES was identified as the first known human trans-placental carcinogen. DES shattered the myth that the placenta was an impenetrable barrier. We now know that about one out of every 1,000 "DES daughters" (women whose mothers took DES) will develop clear cell adenocarcinoma (cancer) of the vagina or cervix. In addition to this cancer, DES also causes a variety of other grievous injuries, the full extent of which often remain latent for decades, until a DES daughter or son reaches childbearing age or beyond.

Of an estimated 2.4 million DES daughters, many have been born with reproductive tract deformities which include cellular and/or structural malformations of the vagina, cervix, uterus and fallopian tubes. These abnormalities cause health problems ranging from infertility to serious difficulties with conception and childbearing.

DES daughters have five times the risk for ectopic pregnancy (a life-threatening condition), twice the risk for miscarriage or stillbirth, and three times the risk for premature labor and delivery. Many will never bear a child of their own. DES daughters who do succeed in becoming pregnant require high-risk obstetric care and are often told by their physicians to spend most of the pregnancy in bed. Despite these precautions, many DES daughters deliver prematurely, which in turn increases the risk of serious birth injuries such as cerebral palsy, or even death, among third-generation DES babies.

Ironically, DES daughters are the most frequent consumers of infertility drugs and reproductive technologies, thus subjecting them—and perhaps their children—to yet another round of pharmacological experimentation. This is because the long-term effects of these medical interventions are unknown, and some infertility drugs are the chemical cousins to DES.

In addition, as the DES-exposed population ages, DES daughters and their physicians face another dilemma regarding the use of Hormone Replacement Therapy. What are the risks of HRT for a population previously exposed to a potent synthetic estrogen prior to birth?

DES mothers, who unknowingly passed on a perilous medical legacy to their children, also inherited one for themselves. Studies point to an increased risk for breast cancer in DES mothers. For DES sons, known effects include an increased risk for reproductive abnormalities and cysts on the backs of the testicles. Research into a possible cancer link for men is ongoing.

In April 1992 the National Institutes of Health sponsored the first research conference to identify the medical questions about DES that can be answered only by further scientific research. Preliminary studies presented at the 1992 conference indicated that when DES crossed the mother’s placenta it not only harmed the reproductive system of the fetus, but the endocrine, immune, cardiovascular and skeletal systems as well. Also cited were animal studies indicating that DES-exposed offspring manifest adverse health effects throughout the entirety of their lifespan.

Researchers suspect that as DES daughters approach middle-age they may encounter even greater risks for DES-related problems. What will be the long-term risks for this population as they age? These are some of the key questions that must be included in the DES research agenda:

* Will DES daughters develop an increased rate of breast and reproductive-tract cancers, as animal studies seem to suggest?

* Will there be a new peak of clear cell vaginal or cervical cancers? How many DES daughters will develop new cases? How many will suffer recurrences?

* What are the long-term effects of fertility drugs on a population already exposed to synthetic estrogen in utero?

* Should DES daughters be candidates for hormone replacement therapy during menopause?

* What are the effects of DES on the immune, endocrine, and cardiovascular systems?

* What are the risks for the third generation exposed to DES?

Further research is desperately needed for these questions and others to be answered. The fact is, no one yet knows the full extent of the damage DES may cause, but it is clear that DES does more than wreak havoc on the reproductive system. It does more than damage the immune system and cause cancer. It has become clear that in utero DES exposure in humans serves as an important model for our understanding of the potential destruction—yet to be fully realized—of endocrine-disrupting chemicals.

For more information on DES, including a free information packet and physician referrals, contact DES Action at desact@mail.well.com, visit the Web site or call 1-800-DES-9288.

Now, more than ever, the power of the Internet and the ease of organizing and accessing information using the World Wide Web has made it possible for people to take more responsibility for their own healthcare.

Search engines such as Yahoo and valuable Web sites like The Virtual Medical Center discuss diseases from acne to zoacanthosis, which can be easily researched with a few clicks of the mouse. Web sites for rare diseases provide support and education which can prevent painful isolation and provide patients and families with an invaluable source of information, understanding and communication. Newly diagnosed patients can find support by clicking into hundreds of Web sites full of patient information and support group locations. CHID Online, The Combined Health Information Database is a database produced by the federal government which provides a wealth of educational materials and medical abstracts.

Gathering information about one’s own healthcare issues can empower the individual and facilitate a productive partnership between patient and physician. While these Web sites and online services provide much valuable information, they are not intended as a substitute for consultation with a trained health care professional.