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Some stories simply do not end ... ever

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Posted: Sunday, November 13, 2011 5:42 pm | Updated: 6:10 pm, Mon Feb 18, 2013.

Many years back, in my teens, my mom casually mentioned that when she was in her 7th month of pregnancy with me, she threatened to miscarriage. This wasn't an informational exchange, this was just conversation. I asked her what happened and she told me she took a drug, went to bed and rested. Oh, and she couldn't hang out wash until after I was born. One day before Mom's due date I appeared; all 8 pounds, 12 ounces of me. Fat, pink and healthy...kind of like today. So can we assume the story ended well?

As it turned out the story wasn't nearly over. More than 25 years ago, just by chance, I read an article about a drug that was given to women in the 50's to prevent miscarriage. The drug was a synthetic estrogen called Diethylstilbestrol. Say that three times fast. Its commonly referred to as DES. I asked my mom about the drug she had told me about. She suggested I call the doctor who treated her. He was retired and living in my home town. I did and, after he dug the records out of a dusty box in his garage, he confirmed that Mom had been prescribed DES. That made me a DES daughter. At that time the medical community only linked the drug to infertility and miscarriage. I hadn't had either of those problems so again I thought I could close this book.

On October 6th of this year, again by chance, I read an article in the Sacramento Bee about a long-term study that had linked DES to an elevated incidence of breast cancer in DES daughters. The study began in 1992 and involved about 4600 DES daughters and a comparison group of 1900 similar women whose mothers had not used DES. Researchers found DES daughters have a 3.9% incidence of breast cancer vs 2.2% of non-exposed women. Do the math...that's nearly double. The health risks were not limited to breast cancer but also autoimmune disease and pre-eclampsia (high blood pressure during pregnancy) among a dozen other female health problems. Oh goody! A hat trick! I've had all three of those.

DES was prescribed until the federal government stepped in and literally told the doctors to knock it off. This crap doesn't work. It was 1971 and DES daughters in their late teens and 20s were found to be at a higher risk of a rare type of vaginal cancer.

Now the last of the DES daughters are approaching their forties and the (still existing) drug companies that sold DES are gearing up for what they know will be a maelstrom of diagnosis and complications resulting from the production and sale of a drug that was never proven to do anything. Shame on them.

But the story doesn't have to have a sad ending. Now you know this information and you are going to tell your friends and they will tell their friends. Daughters will talk to their mothers, grandmothers and aunts about this part of their medical background. Word will get out, so it really isn't ending. Especially, because now I have to tell my sons that they are DES grandsons and even less is known about the risks they face.

And the story goes on...and on...and on.  

For more information on DES Daughters: http://www.desaction.org/

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1 comment:

  • judirh barrow posted at 5:04 am on Thu, Aug 30, 2012.

    judith Posts: 1

    Grateful if I could use a sentence or two as quotes for my book - see my website http://www.judithbarrow.com
    Called Silent Trauma - it's being published December 2012 as an eBook with the backing of DES Action USA.
    thank you for reading this message


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