Stupid Cancer App Connects the DES Community Online

Requires iOS 10.0 or later. Compatible with iPhone, iPad, and iPod touch

A new smartphone app from the nonprofit Stupid Cancer gives the DES community a unique opportunity to seek support from others with DES exposure or cancer diagnosis.

The more DES-exposed individuals who use the app, the more valuable it is to everyone in the DES community.

After downloading the free, secure app (initially for Mac only), participants create a profile. By selecting the DES-exposed option in “What was your primary diagnosis?” individuals are instantly matched to others.

Originally shared via Your DES Action Monthly Email Alert!
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DES Explained (song) – from Beginning to End (pretty much)

By a DES GrandSon, 2014

by J. Soul – DES Explained
published on 1a Dec 2014 by TheMadScientist

  • Mad Scientist featured image credit wikipedia.
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Getting Your Period when you are a Young DES Daughter…

The Devastating Effects of a 1940s ‘Wonder Pill’ Haunt Women Generations Later

” In the throes of puberty,14-year-old Su Robotti had developed “humongous breasts,” but she was still waiting for what she really wanted: her period. The year was 1969, and Robotti was filled with anxiety as she watched her friends, one-by-one, come to school and report that they had begun menstruating. All the while, she kept quiet, agonizing over when she’d ruin her first pair of underwear. At times, she even considered lying about it, but nervous thoughts would always inevitably halt her—she couldn’t even pretend she knew what cramps felt like.

Robotti’s mother, who had gotten her period when she was 12, was less anxious and more worried. At her mother’s insistence, Robotti found herself reclining in a gynecological chair. She watched as a doctor massage her lower abdomen as part of an external pelvic exam, and then listened to him deliver the report to her mother: Her reproductive organs were infant-sized and she only had one working ovary.

“I just felt like I wasn’t enough,” remembers Robotti today. At 59 years old, Robotti still hasn’t gotten her first period—and she never will. Robotti is a “DES daughter, …”

… continue reading The Devastating Effects of a 1940s ‘Wonder Pill’ Haunt Women Generations Later by Amanda Arnold on broadly, JAN 5 2017.

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Above the Fog

A Life Journey with DES

above-the-fogAbove the Fog is a powerful story of one women’s struggle with DES (diethylstilbestrol).

The drug was developed in 1937 as the first synthetic estrogen. Millions of pregnant women who had previous miscarriages or premature births were given this drug in hopes of correcting the problem with their pregnancies.

Years later the tragic results started showing up in the daughters and later on in the sons – but the FDA did not contraindicated this drug until 1971 to all pregnant women.

This story is about one women, who never gave up in the face of her repeated health issues caused by DES or her family’s extraordinary health problems. She was determined to face the hard times with dignity and grace.

Author: Sue Carver, a wife, mother and grandmother based in Sequim Washington for the past 42 years.
Publisher: Outskirts Press, Inc.
Publication date:08/05/2016
Pages:230

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Débat : Scandales des médicaments, à qui la faute ?

Les lobbies pharmaceutiques sont-ils les seuls responsables?

Reportage diffusé sur France 2 le mercredi 16 novembre 2016.
Julian Bugier organise le débat.

Ecoutez les interventions de Tifenn, Réseau DES France:

  1. de 16:35 à 25:05,
  2. de 46:15 à 47:35,
  3. de 48:20 à 49:00.
Quelques Tweets…

Le Distilbène DES, en savoir plus

Nothing to hide and tons to expose

“I am willing to share my story in all it’s tit details to bring awareness”

My neighbor, Sharon, got diagnosed with a brain tumor from DES given her mother. It was about 1971 and she was about 13 or 14. I was 11 when I brought the news home to my Mom. She went silent. I asked what was wrong and she told me she’d had a miscarriage between my older sister and me. She’d been told to Not get pregnant again. As soon as the doctor became aware of her pregnancy with me, he’d prescribed a miscarriage prevention drug and a glass of wine a night to calm her nerves. My mother called the obstetrician right then. He told her a drug name that wasn’t DES.

We thought I was safe. He lied! 56 years of bad meds, BUT 15 useful surgeries. Only some help for Birth Defects: eyes; severe astigmatism and lack of left eye left abductor tendon (left eye MUST perceive Autism spectrum style: go cross eyed looking left); and sacral dimple; PCOS, Endometriosis, which had gotten into my sinuses requiring ovectomy and hysterectomy (surgical menopause at 44), Diabetes, 7 miscarriages, PTSD, Optical Migraines, prolapsed urethra, osteoporosis, osteo-arthritis plus 30 years of extreme levels of both male and female hormones. At least 5 physicians agree likelihood I was born hermaphroditic and surgically altered to female at birth. My parents possibly unaware. My parents thought my LGBT was crazy and using family member police officer got me thrown into the psychiatric system at 22. Blame and shame the victim. Can’t be an angry woman. Can’t get doctors to care about any physical issues if they’re prejudiced. The good doctors who aren’t prejudiced assume other doctors are not either. No One is willing to rock the boat.

Finding this information and now, everything about my life fitting. It’s not ME. It’s not my fears. The insurance, medico, pharmico complex is still scrambling to cover this up completely. Mind Blown at buying the lie it wasn’t “DES” for 45 years. Wish I had a power base to help. I am willing to share my story in all it’s tit details to bring awareness. I have nothing to hide and tons to expose.”

Rev. Poohzen D. Bear SOMAS
Messaged Diethylstilbestrol DES, 15/10/2016 at 13:35.

DES DiEthylStilbestrol Resources

Families exposed to a synthetic hormone experiencing high rates of cancer and infertility

DES Action Australia – Channel 9 News, 1999

Video published on 7 August 2016 by DES Action Australia.

DES DiEthylStilbestrol Resources

Compensation needed for thousands of Australian women affected by a pregnancy drug

DES Action Australia – Channel 7 News, 1999

Video published on 7 August 2016 by DES Action Australia.

DES DiEthylStilbestrol Resources

There is No Doubt that DES was a Massive Medical Mistake

DES Action Australia – DES Daughters and Tall Girls, 60 Minutes, 1999

Video published on 24 September 2016 by DES Action Australia.

Includes interviews of Pat Cody, former President of DES Action USA and Dr Jules Black, Queensland Gyneocologist and sexuality expert, about the silence around the DES issue and the difficulties to push for a much needed Australian DES National Public Education Campaign 10 years after the USA first DES national campaign launched in 2001.

DES and Quest to Manipulate Height
DES DiEthylStilbestrol Resources

Synthetic Hormone Given to Healthy Teenage Girls

DES Action Australia – Tall Girls, Today Tonight, 1998

Video published on 24 September 2016 by DES Action Australia.

DES and Quest to Manipulate Height
DES DiEthylStilbestrol Resources