DES INFORMATION — What is DES?
DES, better known as Diethylstilbestrol, is a synthetic hormone given primarily between 1938 and 1971 to an estimated 4.8 million women in the U.S.
Private doctors, medical clinics and military bases around the world gave this hormone to pregnant women to prevent miscarriage and “improve pregnancy outcomes”. It was eventually determined ineffective. It was given by pill, injection, vaginal suppositories and sometimes pregnancy vitamins. Any woman who received medication during their pregnancy primarily between 1938 and 1971 and the child she was carrying, may have been exposed.
The FDA directed doctors not to prescribe DES to pregnant women in 1971, when it was linked to a rare vaginal cancer in DES daughters. There are not usually obvious signs of exposure.
DES daughters need regular screening exams for a rare form of vaginal cancer called CLEARCELL CARCINOMA. DES daughters also need special care in the beginning first weeks of pregnancy (no matter how many children you’ve had). DES sons are at increased risk for non-cancerous cysts on the back of the testicles and for underdeveloped testicals. Women who took DES are advised to pay particular attention to their breast care because they may have a small increase in their risk for breast cancer.
It is very important, if you were pregnant or born between 1938 & 1971, find out if you have been exposed!
This information provided by DES Action. You can write to them for more brochures, a complimentary newsletter, and information about joining in the DES cause, by writing or calling:
DES Action USA
1615 Broadway, #510
Oakland, CA 94612
1-800-DES-9288 or (510) 465-4001
Their web site and other DES sites listed back at the Medical page.
IMPORTANT LEGISLATIVE INFORMATION ABOUT DES
Fantastic news!!! The DES Bill has been PASSED!!!!!! This bill extends DES research until the year 2003.
Copied by permission of Molly Spira – DES daughter, and DES Action:
Now is the time for all good women to come to the aid of our cause. For those of you who have not yet become DES Action members and/or did not receive their latest mailing:
DES Legislation (H.R. 1788 and S. 834) has been reintroduced into the 1998 Congress. Only you can help make sure this bill passes and that DES Research and education continue.
Please help us bring our bill to light and write a letter or make a phone call to your respective Congress people. A sample letter follows. To call your representatives call the Capitol Switchboard at 1(202) 224-3121 and ask to be connected to your senators and representatives. If you don’t know who they are – tell the operator and s/he will tell you. If you know their e-mail – that too would help -(tho personally, I have e-mail a number of legislators in the past and felt like my impact was lost into cyberspace.)
I (Molly Spira), personally, have written letters to all of the senators and representatives (those I know) in all three states where I have lived: Wisconsin,California, and Utah. I urge you to do the same – IMMEDIATELY. DES Action has been told that a single letter or telephone call to a member of Congress counts for 100 people speaking up ….. Just think if all of us did – the impact would make their heads swirl…..Senators and Representatives
pay closed attention to constituent mail. Even a few letters will make them sit up and take notice.
An excerpt from the bill:
“The Secretary of Health and Human Services….shall carry out a national program for the education of health professionals and the public with respect to the drug diethylstilbestrol (commonly known as DES)….In developing and carrying out the national program, the Secretary shall consult closely with representatives of non-profit private entities that represent individuals who have been exposed to DES and that have expertise in community-based information campaigns for the public and for health care providers”.
The bill also provides for a “permanent extension” of the program authorizing DES Research through the National Institutes of Health (NIH).
Here’s a sample letter:
I am writing to urge you to sponsor and support S. 834/H.R. 1788, the “DES Research and Education Ammendments of 1997”. I also urge you to
support an appropriation for this legislation.
This legislation mandates a continuation of DES research and the establishment of a national DES education program for health professionals and the public.
The 10 million Americans exposed to DES need research into the long-term effects of exposure to this powerful drug. We need to investigate reports of damage to the immune system, third generation
exposed, and other urgent health concerns.
I (or family member) was exposed to DES in 19__ (before I was born/when I was pregnant).DES exposure has meant________to me.
Thousands of your constiuents are counting on you to take steps to address the medical disaster of DES exposure.
Thank you for your help in ensuring DES education and reserarch.
Please let me know what you plan to do about this important national health issue.Sincerely (Your name and address)
Their addresses are:
Washington, D.C. 20515
U.S. House of Represenatives
Washington, D.C. 20510
Please remember to mention that we need a CONGRESSIONAL APPROPRIATION (That means money)attached to this legistlation to make sure it is carried out with full intent.
Copies of your letters should be forwarded to DES Action USA at:
1615 Broadway #510 or Fax: (510) 465-4815
Oakland, CA 94612
Here is the link to the Voorhis Family Page where this information came from. Visit them and say hi. Tell them Brenda sent you.