DES Diethylstilbestrol reviews

Your reviews matter to us – Thank you to all those who took the time to share their feedback about “Journal of a DES Daughter”.

A friend recently asked me a question that I often asked myself before my husband and I started on our “DES activism” journey: is it worth the time, efforts and dedication? The answer is simple: YES! Why? Just read these reviews / testimonials by people affected by the DES drug tragedy in one way or another. We are so grateful to all those who took the time to write a review about our website and we are thrilled that people find my “Journal of a DES Daughter” informative and useful. Your kind words of support keep us motivated. But before you start reading you may wonder what Alexa is…

Selection of Reviews left by DES-exposed individuals

DES – what we should know

I am mostly moved by the reality that there are people unaware of their exposure and the potential adverse health effects of diethylstilbestrol. Many don’t make the link between DES exposure and the health problems they are facing and sometimes even doctors don’t make that link either. Wouldn’t you want to know?
by Nate – Aug 07, 2012

My Mom took DES, what did it do to my Sister?

I try to visit from time to time because my Mom took DES to not lose my sister when she was pregnant. I didn’t even know it until my sister told me. I was only 7 when Mom was pregnant and as a child you just want your Mom to be okay and the baby to be alright. My sister has had many health issues, her lupus may be related to this, no one really knows, but she has it in remission right now. I am angry that the patients were given a drug that could cause so many problems for the children and their children. I learn more from this site each time I stop by. Keeping up with the latest research and the lawsuits is unbelievable hard, but this site does it so well and in easy to understand language. What we don’t know is if my Mom took DES with all of us? Each of us has health issues that are very unusual, and it makes me wonder because she did have two miscarriages before she had us. She passed from Dementia, so we will never know.
by Michelle – Jul 28, 2012

Wonderful informative Site

The site is very informative on the issue of a drug being administered to pregnant mothers which causes all sorts of problems. When I found out it was put in milk and being a Londoner I was forced to drink the milk as part of the school program, I am disgusted. This issue needs so much attention and unfortunately it receives so little.
by Barry – Jul 25, 2012

Did your Mother take DES? It could be causing you Problems now

and one way to find out is to check out this site. I had not known that my mother took DES when she was pregnant. She decided to discontinue it and had very limited exposure. Nevertheless, my jaw dropped when I read the list of things that are common to DES daughters, since I had experienced four or five of them. Great information!
by Susan – Oct 15, 2011

The Heartbreak of DES

As someone who has first hand experience with the side effects of DES, I found this blog to be a wealth of information about the drug and its use. The fact is has such lingering effects we may not even know about yet, is disturbing at best. The blog’s writer effectively combines medical research and data with her own personal journey as a DES daughter and mother, who is concerned about the yet unknown effects this drug may have on her own precious daughters and their children. The travesty against woman and men of mothers who were given this drug, as well as their future children, is something the writer communicates with passion and compassion.
by Paula – Sep 03, 2011

When I started writing my “Journal of a DES Daughter” a year and half ago I never thought I would be able to reach out to so many people – not only to victims of the DES drug scandal interested in DES health issues but also to people who had never heard about what is often referred to as the “Silent Thalidomide“. Thank you for your continued support. Your reviews mean a lot to us.

1000 Thanks to our 1000 Facebook Fans !

June 21st 2012 marks a Milestone in our efforts to raise awareness of the DES drug scandal and tragedy! 1000 Fans of “Journal of a DES Daughter” have joined us on Facebook to support our work and further help spread the word about the devastating impacts of this drug. My heartfelt thanks goes out to each and everyone of you for your continued support and interest in the DES cause! Thank you 🙂

Please find a list of Facebook groups and pages providing updates about the Diethylstilbestrol related issues as well as support for DES victims.

Spread the Word

Diethylstilbestrol, Journal of a DES Daughter on Facebook image
Thank you for sharing our page !

New Online Global DES Health History Survey

Calling all DES Mothers, Daughters and Sons!

DES diethylstilbestrol health history 2012 survey image
The DES Health History Global Survey is our chance to be heard and make all of our health experience counts!

Take part in the new DES Health History survey created by DES Action USA and open to all DES-exposed individuals worldwide.

The survey is designed to establish trends and identify health issues faced by women who took Diethylstilbestrol, their DES exposed children, and also their children (DES granddaughters and grandsons).

Data from the DES community on health conditions – beyond those already known – which appear more frequently in DES-exposed individuals than among unexposed populations is critically missing. This information is needed to share with researchers who can follow-up with further study.

My mum has recently been diagnosed with Hashimoto’s Thyroiditis, an autoimmune disease that affects the thyroid. Could it be associated with her exposure to Diethylstilbestrol back in the late 60’s? Is she the only woman who was prescribed the wonder drug DES during pregnancy to suffer from this health condition?

I suffer from anxiety and stress from worrying about what the future holds for my daughters and whether Diethylstilbestrol will affect their health and chances to give me and my husband grand children. Am I the only DES daughter out there who cries in secret when her little girl plays being a mum knowing that this synthetic hormone may one day prevent that imaginative play from becoming reality due to potential DES pregnancy complications?

The children of Marie-Odile Gobillard-Soyer, a French DES mother and researcher in molecular biology, both committed suicide. She started an association and in 2011 conducted a national study among children of French DES mothers which revealed a link between DES and mental illness issues in DES daughters and sons.  Could this be a worldwide trend?

In October 2011, the alarming results of a study analyzing the risks of diethylstilbestrol related disorders among women whose mothers took the synthetic hormone during pregnancy, compared to others who weren’t exposed were published in the prestigious New England Journal of Medicine. But victims of this drug scandal wonder if other health conditions that are currently not associated with DES by the medical profession could in fact be the direct result of Diethylstilbestrol exposure. Hopefully the new global DES Health History Survey will answer these questions.

Since I started my Journal of a DES Daughter, I’ve read many sad testimonials and DES stories. What they all share in common is the incertitude for the future and the feeling that the DES drug scandal and its associated health issues are not enough acknowledged publicly and by the medical profession. The DES Health History Survey will provide DES Actions groups and DES activists with the data needed to push for more studies and support for DES victims.

Why is it important to know whether your health condition is associated with DES or not? First because DES victims have the right to KNOW and more importantly because PREVENTION of these conditions when you know you are at higher risk can save lives.

The deadline for the completion and return of this survey is JUNE 15th 2012.

The survey can be completed online or you can download the “DES Health History Questionnaire“.

Please share this information on your social networks, with your friend and family who may be interested in completing the survey. I can’t stress enough the importance to take part! This is our chance to be heard and make all of our health experience counts!