DES warning

of interest to anyone born between 1941 and 1972 -- or classes of 1958 to 1990

Are you a DES daughter or son? I am. DES stands for Diethylstilbestrol, a synthetic hormone drug given to nearly 5 million pregnant women between 1941 and 1971. DES was prescribed in a mistaken effort to prevent miscarriages. In-utero DES exposure has been linked to cancer, reproductive health problems, and other problems. Those exposed need to make sure they are receiving proper health care. Ask your mother or another family member and find out if you were exposed to DES during her pregnancy. You can get free information from these organizations:
DES Action USA or 1-800-DES-9288
The DES Cancer Network or 1-800-DESNET4

 - Judy Zuckerman (now Judy Fine), class of 1974

Continue reading to learn my story in detail. By writing out the details of just one case (my own), I hope to impress the seriousness of this hidden danger. 4 million women have been exposed to this drug in the U.S., so probably hundreds or thousands of us in Levittown and Long Island have been exposed, and many affected by it.

I was born in Levittown and I have some medical problems because my mother took a medicine called DES (diethylstilbestrol) while she was pregnant with me. Your mother may have taken it too because it was widely prescribed in our area during and after the baby boom.

The news about DES and its link to a rash of rare cancers broke in the New York Times in 1975 when I was 19. At that time, 19 was thought to be the age of peak risk for these cancers. (Since then it has emerged that the cancer risk does not diminish with age.) My mother read the story in the Times and called me at college to tell me I had been exposed. I rushed off to the college clinic to get myself checked. The tests found nothing unusual, but that is NOT the end of the story.

DES was supposed to be a wonder drug that prevented miscarriage. It was a synthetic form of estrogen that was heavily marketed to obstetricians from 1941 to 1971. Heavy marketing produced heavy prescribing by doctors, particularly in our area, as I recently found out. My mother had had a miscarriage just before she became pregnant with me and that is why the doctor prescribed it. DES was promoted as being entirely safe and could even make a healthy pregnancy "healthier", so some doctors even prescribed it for patients with no history of problems. And, as you might suspect, studies showing harmful side effects of DES had been suppressed by the drug companies that manufactured DES.

It didn't cause problems in all of the exposed fetuses (us) but in some of the females it caused a variety of problems including rare types of vaginal and cervical cancers, malformations of the uterus, and eventual problems with infertility, miscarriage and increased risk of ectopic pregnancies. There is also a possible link to autoimmune diseases. In males it sometimes caused genital abnormalities and eventual infertility. And the women who were given DES (our mothers) have a higher risk of breast cancer.

My mother and I went to a DES symposium last year where I learned something which made my toes curl. The director said that there were certain geographic areas of heavy exposure, one of which was on Long Island, particularly from some obstetricians and gynecologists in Levittown, who apparently prescribed it to many of their patients. They even mentioned the names of my mother's doctors. (Their office was near the West Village Green.) At that point I became upset with myself for not having found some way to warn others at every high school reunion I'd been to. At the times of my class reunions, I hadn't exactly felt moved to go around the party telling everyone my medical history! Somehow I had the mistaken impression that my exposure was probably a rarity. But DES exposure is notrare. Anyone or everyone I knew could have undetected DES exposure that could line them up for serious medical problems! I've been in touch already with one other exposed alumnus with medical problems. Many of the DAHS alumni's mothers must have used those same local doctors or others just like them. I know I'm not the only one with problems due to DES exposure.

A routine exam won't always show if you've been exposed to DES. My early exams, even the exams requested specifically because of my DES exposure, showed very little unusual. I thought I was fine and had escaped any effects of exposure. It wasn't until after I had had a premature baby, a miscarriage and an ectopic pregnancy that a more specific test finally showed the unmistakable effects of the DES. If I had taken that test before I ever became pregnant, I would have been placed in high-risk pregnancy care and my daughter would not have arrived prematurely and suffered brain damage as a result. DES-exposed women need extra tests before pregnancy. DES-exposed women should also be sure to get a special more thorough type of Pap smear annually. There are no statistics as to what will happen during menopause because the female exposed population is just getting to that age and research is only now beginning to be funded.

I might also mention that I know of women who were exposed in utero like I was, who have no known health problems whatsoever. Their pregnancies were uneventful, no infertility, no miscarriages, no cancers. Exposure to DES does not automatically mean you will have health problems, but there are no guarantees. It is important to know whether you have been exposed to DES and to take appropriate action if you have. Ask your mother!

Check these web sites for further information:
DES Action USA or 1-800-DES-9288
The DES Cancer Network or 1-800-DESNET4

 - Judy Zuckerman (now Judy Fine), class of 1974

posted 2000.12.21
last edited 2005.04.22

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