Customer Reviews

DES Stories : Faces and Voices of People Exposed to Diethylstilbestrol

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If you thought DES was a thing of the past - guess again. DES is alive and well. All you have to do is look into the faces staring up from the pages of this book and listen to the personal stories of the people exposed to this drug to know you are in the presence of a powerful force. No, I'm not referring to DES, although its impact is profound. I am referring to the miraculous ability of the human spirit to survive and transcend experiences most can only imagine. I know. I'm one of the survivors.

While you will not find my story contained within the pages of this book, I am there. I am a DES daughter, a cancer survivor. I am also a psychotherapist specializing in health psychology. Through my work, I hear a lot of stories, but few compare to those associated with the widespread medical mistake of DES.

Despite the scope of the problems created by this drug, those of us who live with the aftermath are in danger of being forgotten, or at least overlooked. Upon seeing a new physician recently, he said, "I was told in medical school that we wouldn't be seeing any more people exposed to DES." I informed him that I certainly hoped he wouldn't see any new cases of DES exposure, but there were plenty of us still walking around to tell the tale of DES and of our experiences with it. This book does precisely that - tell the tale.

Many thanks to Margaret Lee Braun and Nancy Stuart for a well-written and graphically poignant book. It is tasteful, respectful, and a much needed reminder that we are still here.

DES Stories is a powerful witness on many levels. One calls readers to share the quiet drumbeat of loss ... unique in the life of each person, yet universal in the experience of this drug. Another calls us to honor the insistence on accountability on the part of all who were involved in bringing DES into women's bodies: drug companies and physicians,primarily. Another calls us to recognize the importance of witnessing and of being witnessed ... of sharing profound and painful life moments without pity, judgment of the ways different people have chosen to cope with their injuries, and without wanting to "do" something. In the face of these stories, the appropriate response is respect, empathy, and our own re-commitment to justice.

This book was a great book on true life stories and DES. It was so great for someone to write a book on illness which effect people everyday. I recomend it greatly!!!

A beautiful book for anyone you know touched by DES-women, men, family, friends, lawyers, and physicians. DES exposed people deserve acknowledgement and information about the drug they were exposed to before they were born. DES Stories does this while also bearing witness to the massive disruption of people's lives, which chemical exposure and drug breakthrough can cause. Get this book to feel empowered. It helps speak the truth.

Two of my sisters are exposed to the drug DES and are affected with infertility and cancer. DES touches every one in a family for the rest of their lives. This book brings home the impact of DES in an unforgettable way. I poured over the stories and photos. The stories are incredibly validating and candid, especially to see people's faces. It does a remarkable job of balancing the pain and suffering of DES but emphasizes people's positive, heroic emotions in dealing with DES. The timeline telling the truth about what was known about DES and when it was known is excellent. This is a very special book.

I would like to thank Margaret Braun for the beautiful, well written book "DES Stories", all she has done on behalf of DES victims, and for all her hard work. All of us DES daughters should not just get this book, but purchase extra books for our loved ones to read so they may understand all we have been through, how we feel about DES and how it has affected our lives. This book gives us courage to say that we are not just DES daughters, but that we are DES Survivors! The book is beautifully illustrated with pictures of actual DES daughters, speaking in their own words, of what DES has meant to them and their lives. I had no idea of the impact that DES is having on so many peoples lives, including my own. DES to me has always been a silent tragedy that no one speaks about in their everyday lives. I am one of the many daughters who suffers quietly on the sidelines and does not speak of it to anyone, including my mother. She is so needlessly overwhelmed with guilt. She is hurting because of the pain and suffering that I have been through. I was so devastated about my own losses that I never looked at the big picture of all the people in the world that DES has affected. I wish people were more open to talk about such a personal and private issue. Thank you, Margaret, for having the courage to speak out about the DES disaster. Your book is a treasure that I will share with the people around me, whose lives are affected by DES. I feel that I now have the courage to speak openly about DES without feeling that I am alone in my sorrows. The book was beautifully done. Margaret, thank you so much for your efforts. I wish I could buy hundreds of your books to give to family, friends and all the doctors that made me feel like they didn't know what DES was. I hope you sell millions and that this book helps to bring DES awareness to the public eye. This book has inspired me. Thank you for giving me courage.

HI folks - thought those of you who have not read "DES Stories" would enjoy these little excerpts re how I felt and others felt when they read it, and a bit of why Margaret wrote it. Please tell me what YOU think:

My response:
Reading this brought back to mind my experience reading your book. The first friend who gave it to me, a male, left it on my doorstep on November 6th last year, my 39th birthday, as a surprise little gift.

I remember being hugely excited as I unwrapped its package and I remember thinking that it was 21 years before on that same date when I found out I had cancer for the first time, on my 18th birthday.
(A nurse from the clinic at Balboa Hospital had come by and left her card with my roommate, reminding her that I must see the doctor again and why - she had left 2 previous messages the week before that I did not return, because it was my first day on the job at the Bank where I was then on that date, a full-fledged employee, instead of an intern. And I had not called back because I was busy preparing for that day and thought it was about more volunteer work, anyway.)

Anyway, what a gift. The first thing I usually do when I get home is run to the bathroom... I remember reading practically the entire book right there on the porcelain goddess.
(I had part of my bladder resected when the cancer spread the 1st go-round. It's fine now - all that delicious balloon stretching that I adored so much (yea, right!) had done a good job...I still drink a LOT of fluids.)

I know one woman who had cervical, vaginal and ovarian cancer and along with the clear cell adenocarcinoma they found choriocarcinoma when she had ovarian cancer. She had her cervix, uterus, ovaries, fallopian tubes, lymph nodes and spleen completely removed. She has had 1/3rd of her bladder removed and reconstructed, 19 inches of her intestine and part of her omentum removed and my vagina reconstructed two times. She had 7 surgeries, external and internal radiation therapy and 4 separate mutli-round sessions of chemotherapy - all encompassing eight years of her life (18yrs old-almost 21 and 30yrs-37).
Today, she still has two tumors in her lumbar vertebrae - one the diameter of a quarter and the other a dime.
BUT - she is healthier than most anyone she knows! (Can you guess who "She" is?)

I remember the tears rolling down my face and rejoicing at the same time, that now the world would know it's true, it's still true and it still will be true and true anew for many yet to come, unfortunately. But now, it was in writing and not just in medical journals or my own doctor's handwriting. There were documented "others" and I was not alone. I, and my DES sisters were validated. And, if any MD dared mention to me that it was a long time ago and nothing of consequence today, I would have something in hand to proudly show him or her before I quietly walked out of their office forever.

The feeling of AWE that sticks with me today continues to amaze me. I brought it to a family picnic around Thanksgiving time last year to give to my mother who was visiting from out of town, and my oldest brother picked it up and read the whole thing right there. My mother picked it up and began reading it very shortly thereafter and even asked me questions! My boyfriend read the entire book the night I gave it to him to read.

What continues to strike me is how this book appears to magnetize the reader, pulls them in and keeps them there all the way through. I've never come across that before or seen someone else experience that either.

Why is that? I believe it's because the book is so subtle. From the colors on the cover to the pictures on the pages, the message within speaks loudly, yet softly of a quiet strength, of endurance. The details are not of morbid skeleton bones found in a closet or of gross deformities or fantastic miracles. Depicting man, woman, child - they successfully link all humankind. Which, combined in this wonderful book, induce the quiet force, revealing the present triumphs of real-life people. "DES Stories" chronicles each individual's rising to the purpose, of finding the answers with mastery of oneself and of circumstance.

It is a peaceful, very special honor to have something in common with these very brave human beings. They are prevailers. We are prevailers! For we are NOT victims, which is what the word 'survivor' connotes to me. We have overcome and become stronger and yes, better.
Love, Suzette