DES Action USA

I can not stress how important DES Action has been to me. I was in my early twenties when I found out I was exposed to DES in utero. I had just had my first child and my doctor suspected I may have been exposed. He suggested the support group of DES ACTION. At the time I felt so along and didn't have any idea how to get any information. DES ACTION has from that point until now given me so much information that I don't think I would have gotten without it. I have subscribed to THE VOICE for over forty years.
It is very concerning that research and THE VOICE may come to an end. Those of us who have been exposed plus third generation deserve more research and continued information.

For many years, I have relied on DES Action to provide up-to-date information on the latest scientific research and recommendations (or lack thereof) for women exposed prenatally to DES. This nonprofit provides trustworthy information that sadly cannot be found on either the CDC or NCI websites.

As a survivor of D.E.S. - from 1948, learning of my mother's taking it during my time of attempting to get pregnant in the 1970's, the eventual finding of DESACTION.ORG has been extremely important to my learning more about its affects. I have also provided the link and information from it to my medical team - and with each new team member - working to help the medical community in my area become Best-Informed for me and for the many others they serve who are most likely unknowing victims/survivors. The folks with the DESACTION group are amazingly informed; the group chats provided are so very helpful. This is a group beneficial to MILLIONS - if they are informed about it's presence. Keep spreading the word!!

I've been a member of DES Action for over 40 years, and am happy to say they've been a vital part of my life that entire time. They convey important research in understandable language, assist those who are still learning of their connection to DES, and are a valuable resource to the community. Kudos to DES Action for never accepting money from pharmaceutical companies.

DES Action has been instrumental in disseminating information to those affected, their medical providers and funders. As a DES daughter, I am grateful to have a trusted source of information and an advocate for critical research.

DES Action USA has been instrumental in educating people around the world and in advocating for research and preventative care. I've been a supporter for well over 30 years. At California conference for women, hosted by Maria Schriver, I helped staff a table for DES Action USA and was astounded by the number of women who had never heard of DES or its health consequences. This is such an exceptional and well-needed organization for the multiple DES-exposed women and men and their descendants.

I’m a DES daughter and have heath issues as long as I can remember. It’s very emotional and difficult to rehash my history, I found out when I was about 21 years of age from my mother’s obgyn ( my re-call letter. ) D & C’s , hemorrhaging, spontaneous abortion at 21 weeks , 2 premature births , physical typical abnormalities I.e. cervical hood , infantile uterus, cystic, breast cancer . I could go on and on ! But my strength has come from the support I received from DES Action, Dr. Burton Krumholtz & Candice Tedeschi, N.P. In those years with the help of New York public interest group. I lobbied up in Albany to fight Toxic Torts like DES. It’s been a long road and I daily I struggle with lots of health issues that most doctors don’t have information on,And I know the stress has not been my friend either but I do the best I can and I’ll always be grateful for DES action/ medshadow. I can only hope and pray for my 2 daughters and grandchildren. The study of epigenetics is frightening I hope they will take care of themselves and have great health care along the way,. I only wish there could be more research and information for all of them. It’s very sad !!

My mother was given DES for the entire term of her pregnancy in 1950. As many other DES daughters I always had atypical Pap smears and had to go through infertility procedures to conceive my first child. It was a godsend to find the DES Action USA support group. The information provided is so valuable . My daughter is currently going through the IVF process due to abnormalities in her reproductive system. As a DES granddaughter this group continues to provide support, information, insights to her and to those of us who live with this.

I am a DES Daughter who was born in 1958. DES Action USA is my go to source for up-to-date information. The staff are extremely supportive and do their best to answer my questions.

pattyb10

My mother took DES for almost her entire pregnancy with me. Because she chose not to share my DES exposure with me, many unexplained, undiagnosed illnesses would occur over the years. It would take 73 years before I heard of DES for the first time....devastating news to say the least. I immediately found DES ACTION....they provided valuable information not only educating me but doctors who had never heard of DES (and would chose not to believe me were it not for DES ACTION) They are the best and I support the great work done by them.

My mother took DES in the mid 1940's to prevent a miscarriage. My father was a pharmacist who believed in scientific progress. Imagine our horror when my sister's gynecologist in the 70's remembered her as the patient who had the symptoms described by the new research into the negative effects of DES on the daughters. Imagine our confusion and concern as it became obvious that the drug manufacturer knew that DES was ineffective and harmful. While my sister and I avoided the rare cancer, we have dealt with the results of DES: from the very early birth of her daughter, to miscarriage, to excessive medical treatment. And through it all, DES Action has been the beacon that provided us the knowledge that we needed and still needed to deal with and understand what it means to be a DES daughter. They provided so much information and advocacy support as well as research findings and even info sheets for our care providers
They have been in the forefront of prevention of further abuse by drug companies who misrepresent their products to the detriment of all. I would award them ten stars if that was allowed. I thank the staff and volunteers for their work.

My mom took DES in 1955. DES Action has been my go-to organization since 1979 for news, support and advocacy. I don’t know what I’d do without them. I pass on their information to my OB-GYN.

My mother was given DES when she was pregnant with me in 1949-1950. Apparently, problems with DES were known soon after that, but the public was not informed of them until the 1970s. Around then, my mother started sending me newspaper clippings about the problems faced by DES babies. I have not been diagnosed with vaginal cancer, but I've had many other problems that may be related to DES. I was so happy to find DES Action USA, which has provided me with one reliable source of information and support over the years. Many of my health care providers are unaware of the ongoing studies of the effects on DES on daughters and granddaughters, and I provide information to my providers when I can. Keep up the good work!

My mom was part of the study at the University of Chicago in the early 1950s, when I was born. I didn't know that I was a DES daughter until the U of C contacted me for follow-up when I was in my 20s. As a biomedical researcher myself, I appreciate their efforts in tracking down those of us who participated in the original study, examining us, and keeping us informed of their findings ... while the funding lasted. Now, as I reach the age when life is taking its toll on my body, DES ACTION USA is my go-to for reliable information about what people like me are facing. In deciding to ignore this first intentional exposure of human development to manipulation by synthetic hormone administration, the Healthcare System has turned its back on the chance to gain valuable knowledge from a bad choice. Did DES exposure lead to my ovarian cancer? Are other daughters at risk? If so, they could be more vigilant and pro-active about the "digestive discomfort" that might have alerted me earlier to what was growing in my belly. Maybe talcum powder isn't the only culprit here ...

I have known about my DES exposure since my teens. This exposure caused terrible outcomes in my mother and me. DES Action has been a wonderful source of informatiion throughout my life. I am now 66 and am very vigilant in my healthcare. DES Action allows me to remain up to date in current research.

My sister took DES for all of her children. My sister and one of her daughter's have both died of breast cancer and most if not all of her other children have suffered from the effects of DES

DES Action USA has done so much to help those impacted by DES to become aware of what DES is and how it could impact their lives and the lives of their children.

They have undoubtedly saved lives by the research that they have been involved with and all of the other efforts that they have undertaken to bring the effects of this drug to people who might not have even heard about it but could be suffering the results of DES

DES Action has been invaluable as a resource and support for me as a DES exposed Daughter. It is the only organization where I can read about research studies, that have been vetted and interpreted for the lay person, so you don't have to try to understand complicated medical terminology and statistics. Research often translates into medical care. DES Action has information for doctors who care for the DES exposed. Without the right kind of detailed care and information about the conditions and risks that DES exposed people may suffer from or develop, they can't get the correct tests, or worse their conditions may be misdiagnosed or dismissed. DES Action is the best, most informative, and comprehensive organization who advocate, protect, support and teach about DES exposure. I depend upon them for the most up to date information about studies and my care.

A fantastic resource for anyone touched by DES. As a DES Daughter, it has been my go-to source for information and support with my myriad of health challenges that are connected to my DES exposure. Very grateful to DES Action for all their advocacy and education over the years that has shed light on this important issue.

My mother took DES when she was pregnant with my sister and me in order to prevent miscarriages. I don't know how many of my gynecological problems are due to DES. However, I am glad that there is an organization that provides information about DES. When I've gone to the gynecologist, I let them know that I am a DES baby so that they will do the appropriate testing.

Since I am a DES daughter it is wonderful to have DES Action USA available to answer questions, send out pertinent information, and know they are staying on top of DES drug testing, etc.

DES Action USA has been a valuable resource to me for more than 30 years. I am a DES daughter. Their advocacy, research & support has helped me ensure I take all the right steps to identify and deal with potential threats.

DES Action USA began as a struggling non-profit--not because it profiled a low-incidence condition--because the medical profession made this high-incidence condition invisible due to ignorance.
Mothers who took diethylstilbestrol in the 40's and 50's considered it a life-saver for their pregnancies and their children because it was New and Best at preventing miscarriage.
Early dosing was high, little was known by the prescribers of its ability to stay in the body AND accumulate during subsequent pregnancies. My mother suffered a miscarriage after I was born in 1948. She struggled with her next pregnancy and took DES and had a healthy boy. Her 4th pregnancy had some difficulties, so she received more DES. My sister was born healthy and life went on until my sister, Ann, reached puberty when she had abdominal pain and seriously heavy menstruation which resisted treatment until menopause.
In the 70's, Mother stumbled on DES information through this non-profit DES Action. Ann was confirmed as a DES daughter. Mother then understood why she was hospitalized one week every month during her 5th pregnancy in 1962, in which she also took DES and delivered a healthy daughter.
We all dug to find the news from DES Action USA. My sister, Ann Giblin, remained a member and later a board member until about 2013. The amount of times each one of us had to explain to OBGYN's what our hidden issues were were frustrating to all 4 of us. They just didn't know; it wasn't part of medical training.
Ann, RIP, was diagnosed with metastasized breast cancer in 2014. Remissed for nearly 12 months. Then it returned in her bones, and soon, tumors in her brain.
If she and my mother had been believed and cared for along the years, perhaps we would still have them with us.
Ann was a member who championed this non-profit, DES Action USA, throughout her life for Mother, for our family, and all seeking trusted information about reproductive health .
Thank You DES Action USA.

My name is Amanda and I live in England. I found out 2 years ago that that the clear cell adenocarcinoma of my cervix at age 17, was caused by being exposed to the DES drug. I'd never heard of this drug before so searched the Internet and found DES Action USA. They have helped me so much with their knowledge and have a wealth of information on their website. I can't thank DES Action USA enough for helping me come to terms with my exposure. I highly recommend joining this website so they can continue with their great work.

My mother took DES when she was pregnant with me. She and I were both members of DES Action for at least 40 years (until her death), and I still am. The organization has been through changes in that time, but it has been a consistent advocate for people who have been exposed to DES. I have always counted on it to give me reliable information, and it delivers that. It's been extremely helpful.

I am an in-utero DES baby, suffering from many afflictions from this exposure in 1955.

DES Action USA has been behind me and so many others ruined by this covered-up travesty of American Big Pharma.

In 1975 when my Mom called and told me what medications her OB/GYN prescribed for her to take when she was pregnant with me, I knew at once it was DES.

Finding DES Action USA, as it’s now called, has given me a support group filled with information and resources.

DES Action is an established, well-run nonprofit and single-handedly represents the interests of people exposed to the synthetic estrogen Diethylstilbestrol. DES Action provides support to exposed individuals and subsequent generations who may experience impacts, by providing information and advocating for research. This work also informs broader issues related to synthetic estrogens widely found to accumulate in people's bodies and the environment. Even a small donation goes a long way with DES Action.

I credit this nonprofit with saving my life. Because I saw a DES Action brochure, I realized that I was a DES daughter which led me to the DES clinic which used to be at Mass General Hospital which resulted in my receiving state of the art care to treat my rare cancer caused by my DES exposure in utero. I’m still here, 40 years later.

My mother had three miscarriages before being prescribed the DES FDA approved drug in 1961. Thankfully I was born. She also became pregnant again 11 months later and had to receive 11 blood transfusions while giving birth to my brother and she contracted hepatitis and almost passed. I visited an oncologist three times for treatments between the ages of 16 - 20. I was told I probably could not give birth due to the severe thinning of my uterus among other physical abnormalities of my reproductive system. I did have some medical side effects and ended up needing a hysterectomy at age 38. The DES Action non profit program has shared so much information and recommendations for me to give to my Doctor, I am very grateful. The women that have shared their stories takes bravery and courage to overcome whatever lies ahead for us.

If it hadn't been for DES Action, my grandson's would have been born very, very prematurely. Even at that they both were born at 36 weeks. But, my daughters OB was aware of her exposure and she educated him on her risks.

If it hadn't been for DES Action, my daughter would have died from a ruptured tubal pregnancy. She got help in time to save her life.

Years ago, I volunteered to do educational presentations for the Physician Assistant course at Stanford U. Very few people in those classes had ever heard of DES exposure. And the one's that had. thought that DES was Thalidomide!

I am thankful for DES Action and have been a member for over 40 years.

DES Action has been an essential source of information for me during the past 40 years. Thanks to them, I have been able access, remain current, and understand what is often highly technical information associated with ongoing DES research. DES Action has also prepared and updated guides to best practices both for the DES Exposed community and for their health care providers. These have been invaluable tools for me when managing and advocating for my own health care.

For over 40 years DES Action USA has been the one consistent source of helpful information about all my health concerns as a DES Daughter. DES Action has always been in communication with the research community to bring the latest studies in understandable language to its members and the public. The work of DES Action continues to be needed by me and all the generations affected diethylstilbestrol.

DES Action is THE place to get accurate and up to date information about diethylstilbestrol and its effects, now persisting into the fourth generation. If you need a doctor near you or have a question, if you want support or validation, check out DES Action.

As a DES daughter and cancer survivor, I appreciate the information I get from DES Action. They are the best! The effects of DES exposure are lifelong !

DES Action has always been there when I needed help the most, in times of medical crisis, providing a wealth of information and support. I can't thank them enough for all they have done for the DES-exposed community. I have been a member for decades, and their mission is just as important today as it ever was. DES exposure has had a profound effect on my life; DES Action has enabled me to connect with and learn from other members who have experienced similar diagnoses. Together we are stronger.

LIving in Australia, I am thankful for this wonderful group that keeps me abreast of all things of having be exposed to DES in utero. This group is vital to my wellbeing and ability to keep on top of my ever altering conditions. DES Action and the group have been exceptionally supportive with issues raised, dealt with sensitively and considered when my doctor is at loss of the myriad of trails I face. DES Action continues to advocate for survivors with scientific research and is the Number 1 source for me to seek information that I am after, which in turn, I provide to my health care team.

I have been a member of this wonderful organization for years. It provides a valuable service to those who, like me, were exposed to DES while in utero. DES Action stays current on medical and legal developments related to DES exposure. It also has a long history of declining funding from Big Pharma so it can provide truly unbiased and accurate information. Their listserve for DES daughters gives us an opportunity to dialogue with other DES exposed people all over.

This forum has provided valuable information and support for those of us exposed to DES in utero. I highly regard the resources provided. They do not try to sway us with one sided information. Rather they provide valid scientific research as well as a safe place for dialogue to help us reach our own decisions.

Great information for those of us who were exposed to DES. Wish I’d known about this group years ago. I’m a fairly new member to the group but not new to DES. I was diagnosed and treated in 1975! So glad this group exists to help survivors into the future.

I am a DES daughter who never really came to grips with all that the DES has done to me. I am learning so much about the connection with my health issues and DES. The newsletter is so informative as well as social media support. I am grateful for this non-profit and all it does to help us get better educated.
Thank you!

DESAction has been a consistent and unbiased source of information. There is no other organization that I know of which validates the DES experience.

I learned of my DES exposure in 1972. Since it’s inception DES action has been there for me. Continually keeping me informed with guidelines and updated screening tools I can take to my doctors. Over the decades I’ve relied on them, I truly don’t know how I could have lived this journey without their support, advocacy and new information as it came to light.

In fact DES action and their newsletter saved my life a few years ago. The Voice had an article stating that even if a DES Daughter had a hysterectomy that she should continue to have Pap testing as the risk of vaginal cancer does NOT diminish. I had been told I didn’t need pap testing. With great trepidation I took the newsletter to a local gynecological doctor. He found several localized lesions that were cancer. My cancer is managed with vigilance, testing, surgeries as indicated. I have no doubt that if I hadn’t gone upon receiving the Voice newsletter that cancer would have spread.

DES is one of the most important non profits. It began so long ago, about 70 years ago and still has major repercussions to the mothers, daughters, sons and grand daughters/grandsons today.
I found that so many GYN/OB physicians, and General doctors know nothing about it. The horrible effects besides breast, prostate cancer, infertility and other problems are showing up today. Yet, blood and bone tests never list it as a possibility. I will email my own, my mother’s and daughters horrendous story and also mention about what happened to my other relatives.
I was fortunate in one way because of Des coalition. I found out because of them about the vanguard in laser surgery, research and educator, Dr. John Marlowe. I had to fly to Washington DC over 35 years ago to seek help from him.
More and more research is needed today than ever before. It is a sad state that I had to explain to so many doctors, nurses, gyn’s and other health professionals about DES. The DES non profit must continue.

This all-volunteer group educates men and women about the ongoing effects of the drug DES given to pregnant women from 1940-1970, primarily. It turned out that the drug had no positive effect for the mothers but increased the incidence of a rare cancer in their daughters. As these women grew older, other adverse effects (such as infertility and miscarriage) were noticed and continue to be reported, even as some of them reach 80 years old. Some of the daughters' sons and daughters have also had adverse effects.
I am a DES daughter and have experienced some relatively mild effects. I had been aware since 1970 that it was important for me to have special test during my annual gynecological exam, but guidelines from medical organizations, the government and insurance companies change so several years ago I did an internet search to see what the current guidelines were.
That is how I found DES Action USA. Their online materials not only gave me easy to understand information for my annual exam, but also about current research, newly discovered concerns that could affect me and my children, and the experiences of other women. Finding DES Action woke me up to this issue as a part of my life about which I needed to be more informed and involved, with the support of a group of admirable women.

DES Action is basically the one reliable and comprehensive source for relevant information and other resources for DES mothers, daughters, sons and third generation. It's also a place to share experiences and find support in the DES affected community. As we learn more about the long term effects of exposure it is vital that this organization can continue to serve us.

Hi. I am a DES daughter and have been a member of DES Action for many years. Believe it or not, My gynecologist told me about it years ago. I look forward to the newsletter as it alerts me to so many issues that we need to be made aware of. Unfortunately, many doctors are still not aware. Maybe 15 years ago I had an appointment with my family doctor. I was also having a female issue so decided to have him do an exam (something I would only have had my gynecologist normally do but thought I would save some time since I was already going to be at the family doctors office.) The family doctor scared me.
After looking inside, he quickly stopped the exam and while washing his hands said in all seriousness and a sense of urgency that I needed to get in to see my regular gynecologist right away as something was going on inside of me that wasn't right. I saw my regular gynecologist the next morning. He calmly said after his exam that I was fine that the family doctor just wasn't familiar with DES tissue!!! I was saddened for me when that gynecologist retired.

A few years back I was referred to an oncologist/gynecologist . Before I actually saw her, I handed the nurse the paper (from DES Action) on the proper way to perform an exam on a DES exposed daughter. She sincerely thanked me for the information sheet. I never would've known about all of this if it wasn't for DES Action. I would've just assumed all doctors who know what to do.
To sum this up, the information dispensed by the DES Action group gives me peace of mind knowing I have the latest information on DES exposure.

My mother was prescribed DES when she was pregnant with me and little did she know what the fallout would be - miscarriages, ectopic pregnancies, hormonal imbalances and premature birth resulting in brain injury for the one successful pregnancy. DES Action has gathered all available information and made it available to women & men affected by DES exposure. They've pushed for research and getting the information out to the medical community. I have seen the difference in my own doctors' visits over the years as they have gone from completely unaware of DES effects to educated and active in monitoring them. I am very grateful for the tireless advocacy of this wonderful organization. It provides a service not found anywhere else to stay current on these issues.

The information that is available , to those of us, is invaluable. DES gives us the opportunity to share any health experiences, situations, medical resources and much more. It is a place for those of us that have been affected by the medication prescribed to our mothers more than 70 years ago, to reach out to. It has become a community watching out for one another, knowing that we are not alone.

I am so grateful that I came across DES Action USA website a year and a half ago. It has provided me with invaluable information and education, with so many who work tirelessly to help and support those who have been affected by DES exposure. Education is so important because many (even medical professionals) do not understand DES exposure and the effects it had on those exposed, they do not understand the journey. DES Action provides a place to communicate, bringing us together in a supportive community with others who understand and are happy to offer loving support. It is so comforting to be able to share with those who truly understand the journey.

To have this site to inform DES Daughters, etc. has been a life-saver (literally) for me. My mom took the drug in 1950 and I have had problems associated with that starting at age 22 and ongoing. I can keep up with up-to-date data on DES, protocols to follow for exams, etc. A big thank you to all involved.

DES Action is always there as things change for those affected by DES. As we age, daughters are experiencing new health issues, sons are finding new connections, and grandchildren are beginning their own journey with DES. It is great to have a place to go for the latest information, and to get support from others who know what you are experiencing.

I started serving as the Community Manager in May 2020. I'm a DES granddaughter and knew a bit about DES and the org, but now working for DES Action, I am so impressed with the support, education, and advocacy it provides for DES-exposed people and the medical community.

DES Action is such an amazingly positive, driven group. I cannot recommend these thoughtful leaders enough.

I rely on DES Action for straight forward and reliable information on the impact of diethylstilbestrol. I have found a caring and knowledgeable community there. My donations are put to good use.

I joined DES Action in the late 1980s. From DES Action I found out about my risks from DES, I learned what to do about it, and most of all I felt better knowing I wasn't alone. Just receiving the quarterly newsletter ensured that I would learn of new discoveries about DES and its effects.
A few years ago I became the executive director and my team and I are proud to carry on the important work of those before me.

DES Action has helped me feel supported in dealing with an issue I've had on my mind since my early teens. It's scary to think we DES daughters have what seems to me like a ticking time bomb (higher cervical cancer risks as well as many other health risks we are still finding out about). We NEED the support of others who share similar issues to help us cope in a healthy way.

DES Action has helped me in more ways than there’s space here to mention. For years I lived in the dark, lacking accurate information and not understanding problems I had had for a long time.

DES Action USA has been a lifesaver. The organization provides reliable information that is relevant to the challenges DES exposed people face throughout their lives, and the members provide unending support. It's what we need in a nonprofit and is fully deserving of the highest rating.

DES Action was a lifeline for me when I first discovered my DES exposure as a young adult, and since that time it has provided information and support through the many stages of my life that have been affected by my DES exposure. It continues to be an excellent source of medical and legal information for me and my children. In addition, through the list-serve it supports, DES Action provides access to a community of other DES-exposed individuals who can share their questions, concerns, and support for each other. Bravo DES Action!

DES Action USA has by far exceeded what I would expect from a non-prof agency. Being a DES Daughter with many complications over the years I have found invaluable support and up to date information from fellow DES Sisters and the leaders and support staff at DES Action. Consider me a life-long member moving forward as I will continue to support this 5-Star agency. LWilson

I recently was diagnosed with CCA due to DES exposure. Not knowing what any of this meant, I did some research and was able to connect with the DES DAUGHTERS and started communicating. The whole organization has been nothing but extremely supportive during my pre surgery all the way through the post op period. They have all been there for me. I receive numerous phone calls and emails from the individuals in the organization just wondering how I am doing and praying for me. They are all wonderful. I really feel like if I had to go through this ordeal, it would not have been as bearable without all my new friends that were there for me. It is a wonderful organization and we all share our stories with each other. They have been great.

It's a place where, for the first time, I could tell my story about DES and its effect on me.

I am a 63 year old DES son and a brother to a 64 year old DES son. Both of us have experienced the effects of DES. My mother had the foresight to tell me about DES back in 1983 after reading new information about the affects of DES. Except for an aging dentist, not a single doctor I’ve gone to had any knowledge of the long term affects of DES. I’ve been reading DES Action now for years. The researched and validated information is a valuable asset for myself and should be required reading for all physicians.

DES Action has a Men's Group in which male victims of DES can confidentially present, discuss, and learn about how DES has affected them and other men.

I am a confirmed DES son, experiencing the effects of DES for almost 60 years. I have found that physicians in general, including endocrinologists, do not know about DES or the effects on all living things from the endocrine disrupting chemicals that we are exposed to every day. DES Action has, for over 40 years, provided well researched, validated information from all over the world that benefits physicians, DES victims, and the general public.

DES Action now has a Men's Group in which male victims of DES can confidentially present, discuss, and learn about how DES has affected them and other men.

DES Action, U.S.A. is a very valuable organization.

I found out that I was DES exposed when I was in college. I have been a member of DES Action, pretty much since it was founded. It has been a place I could turn for trusted information, the latest studies and recommendations and the kinship of others who have been affected by this horrible drug. They have not only provided valuable information for me, but also for my health care providers, some of whom would have been otherwise fairly ignorant about DES and its effects.

I learned in high school thAt my mother had taken DES when she was pregnant with me... probably because she had two miscarriages before I took. My cervix was misshapened, But that’s the most of my results....
This nonprofit is wonderful... it’s great to have a place to go, to be a part of. I really appreciate it!!

DES Action offers critical services for women affected by DES. From information to peer support to activism, DES Action protects and empowers women and has done so for decades.

I have been a member of DES action for years. It is a wonderful support group with numerous resources available for those affected by DES

DES Action is very helpful in providing vital health information, as well as much-needed support. Since many people are unaware that they were exposed, it’s crucial to provide this knowledge.
I’ve learned so much about troubling health problems that I had no idea were connected to my exposure. And it gives me hope for the detection of problems in my children.

I have enjoyed and benefited from a long-standing membership with DES Action USA. They have helped me whenever I have called with questions and they certainly helped me accept the fact that 2 of my 4 children are homosexual. I believe this is a direct result of my DES exposure when my mother was pregnant with me. Thank you DES Action USA!

I became a member of DES Action in the late 1980s. Being a DES daughter is not something I like to think about often. I don't have any active health issues. But getting the newsletter every quarter is worth the cost of membership. I just read it through and I know I'm up to date on all I need to know about DES.

I know several people who work for this wonderful organization. What they do for those impacted by DES is amazing. They create a real sense of community for them, answer calls and hold events such as frequent Facebook live broadcasts with interesting and informative speakers. They do so much with a tiny staff and tiny budget and are to be applauded for their efforts.

DES Action USA has been the best source of health and advocacy information for me and my family for decades. I trust DES Action!

I've seen firsthand how invaluable DES Action USA is to the millions of DES exposed individuals across the nation. The organization keeps the DES-exposed community up to date on everything from doctor's lists to the latest research and ways for DES exposed individuals to connect with and support one another.

DES Action USA is an outstanding organization bringing much needed news, updates & research information to those who have been exposed to DES, a hormone thought to prevent miscarriage in the 1950's, 60's and 70's. This drug , prescribed to millions of women worldwide has caused devastating ill-effects to the offspring born to these women., including rare uterine & cervical cancer, infertility, breast cancer, reproductive organ malformations. I have found this information monumental & necessary to those exposed to this so-called "wonder-drug". Its one of the very few organizations providing referrals, supportive personnel and research information gained by various professionals.--Christine

I have been a member since 1979 and helped to start both DES Action, Connecticut and DES Action, Los Angeles. This great group taught me what support can mean to a person stunned by the news that your mother took a drug while pregnant with you that could harm you. DES Action has been there with information, advocacy, training, mentoring and so much more. My own journey has included infertility, a miscarriage, endometriosis, a hysterectomy at 30 and breast cancer. DES Action has helped with each. I would give them six stars if possible.

I am a DES daughter, and have several health issues, this website is a great rescource for information as we all try to find a link or understand our health issues. As I am on disability now I would love to volenteer. The more I read the more I know about what is in the future for my kids and the effects that DES have on them and their children. Thank you for all the info.

I was so impressed when I found this website. It is a tremendous resource as well as support system. I emailed and asked for the Maine Doctors List as had not been feeling well and did not realize the amount of information available. It is horrible that this drug has caused so much pain for people who took it, having no idea that it didn't even work. It was a money maker for the drug companies. My mother took DES when she was pregnant with me and I believe it was later on in her pregnancy. I was premature at 36 weeks. She had two miscarriages following and was heartbroken, especially when a nurse botched an opportunity (flushed the specimen instead of sending for analysis as her dr. had ordered) that would have allowed her to obtain more specific information. After reading the available information, I can't help but wonder if there was anything "wrong" with my mothers ability to carry a child or if it was caused or worsened in relation to her DES ingestion while pregnant with me.

I am a DES granddaughter. I just became aware a few months ago when I started having several health issues. I found this site, and watched all of the videos, and downloaded what I could for my family. I also reached out to the listed contacts, asked questions, and they answered so quick! I'm going through extreme financial hardship, so they allowed me to request a scholarship membership in order to have access, and receive "the Voice" mail outs. I'm so amazed at the care and concern expressed through our emails and phone calls. They are TOP NOTCH!

I am a DES daughter born 1969. Over the years, DES Action has been an invaluable resource of the latest research and scientific findings, answers to questions, an informative newsletter, and wonderfully supportive yahoo group where others can share their suggestions and support.

I am a DES Daughter and the new Community Manager for DES Action, USA. DES Action provides vetted articles on ongoing research and research results for the DES exposed population. This is so vital as DES exposure requires a lifetime watch, and has effected 3 generations: the mothers who took it, the children exposed during fetal development, and now the grandchildren. DES Action provides education, emotional support and resources like doctors' lists or examination protocol that is vitally important for the DES exposed. Without DES Action, USA the DES exposed population would be blindly looking for answers. DES Action advocates and brings awareness to the DES exposed and the general population, including the medical community. It also provides a an online community for support and discussion. Without DES Action, I would not be able to navigate my medical care with my doctors who are often not aware of the latest findings or recommendations. Last, DES was the first transplacental carcinogen and endocrine disruptor created by man. It is a model for all other endocrine disruptors that are being studied.

I am a DES daughter and former board member of this non-profit. With the support and help of this non-profit I have been able to stay informed on medical research and knowledge on the impact and effects of DES for my entire family. This organization does a lot to provide resources like questions and surveys to use when interviewing new physicians, they provide updates on latest research findings and support groups for multi- generational individuals impacted by this drug. They provide educational articles and resources on the drug and its uses as well as its impact. It is a small non-profit that would benefit from the visibility of Great Non-Profits to help continue their work.

As a therapist , I am happy to have access to DES Action as a resource for my practice . Articles, research and a community for DES daughters and their families. Great reporting And up to date information .

Along with physical issues caused by the anti miscarriage drug, DES, come emotional ones as well. My mom carried guilt for years because she did what her doctor told her to do while she was pregnant with me. In good faith she took the pills he prescribed because she so much wanted a baby. Then when I couldn't get pregnant she blamed herself. But DES Action reminded her, and all so-called DES Mothers that it isn't their fault. Greedy drug companies promoted DES to doctors even while knowing it didn't work. Urgggg! I'm grateful DES Action helped my mom understand that drug makers are to blame, not her. I've been a proud donor for many years as a result.

As a daughter of the DES generation, I was always acutely aware of the bullet that I had dodged when I finally learned that my mother had indeed not taken the drug. But not only did that period of uncertainty make me incredibly grateful, but gave me an appreciation for the important role that DES Action has played over the years. And, while that drug has long been taken from the market, it provides a cautionary tale for all of the other "wonder drugs" with which we are constantly being confronted.

Although the DES disaster has slipped from the headlines, its impact on women remains strong--mainly through the daughters of mothers who unknowingly harmed their children with a drug their doctors prescribed. DES Action USA continues to educate the public that pharmaceuticals can--and DO--have significant side effects that must be fully understood before we allow Big Pharma into our bodies.

Learned about DES Action through a friend. It has become an invaluable resource for accurate and useful information. There are two members of my family that have been effected by DES. While direct lines have never been drawn, connecting the dots is clear as one understands the impact on the children of mothers who took DES. The more information is made available through not-for profits like DES Action, the better it bodes for everyone's the future as pharmaceuticals become even more prevalent in our everyday lives.

My wife and her sister are DES daughters. This has had a profound impact on them and their lives. DES Action has been an phenomenal organization at so many turns in dealing with the multitude of issues they have confronted. A constant resource for them through most of their adult lives. It continues today as an unique resource for so many.

I am overjoyed at the opportunity to donate to DES to ensure its work and its mission.

DES Action continues to provide relevant information, support, and advocacy for people whose lives have been affected by the drug DES. It has been a lifeline for myself and my family since it's inception...which was around the time of the birth of my first child. His prematurely, due to DES, left him severely disabled. Thus DES impacted the physical, mental, emotional, and economic quality of our lives and DES Action continues to provide the tools for us to deal with the devastation that this drug has caused. This organization continues to disperse information, encourage medical research and laws surrounding safe use of pharmaceuticals, as well as provide relevant information to daughters, sons, mothers, fathers, and grandparents around the world.

This is an irreplaceable resource for any child or grandchild who has ever been exposed to DES before birth. Though DES is not in the news much anymore because OBGYNs stopped prescribing the "better baby pill" after it was discovered (in the early 1970s) that the children, especially the daughters, of mothers given this medication were exposed to high levels of synthetic hormones. And those hormones 15 or more years later led to fatal cancers. There are millions of us still alive who were exposed to this horrible medication. DES Action is one of the few places to which we can turn for support and information. The research coming out of DES studies led to massive changes in what pregnant women are allowed to ingest during their pregnancies. But another big application of this work - which government agencies refuse to deal with - is the amount of synthetic hormones - called endocrine disruptors - we are all ingesting in the pesticides sprayed on all non-organic food. DES Action is immensely important in this fight.

This site probably saved my life and my sanity. What a powerful nonprofit I completely depend and am devoted to.

My wife's best friend is a DES Daughter, which is how I learned about both the drug and this association. I now wonder if I might be a DES son, since my mother had multiple miscarriages during the 1950s, just before and after I was born. Through my wife's association with MedShadow Foundation, I learned about DES Action and I learned from their great resources. Kudos to these tireless volunteers for their work to keep this cause alive for so long.

DES Action has all the latest information about what is going on with research. There are so few sources for this kind of information that supporting DES is important to me.

DES has affected members of my family. This is the only organization keeping us informed about news and scientific discoveries about the harm DES has on health. It's vitally important to support organizations that report on endocrine disruptors, which are having a grave impact on not only health but the environment.

I"ve been a memeber for more than 25 years. Its' s the only source I know for reliable, up to date information on the ongoing damages of DES.

Dear Nonprofits Organization Personnel,

Allow me to introduce myself. My name is Douglas Stevens. I am fortunate to have discovered Sacramento Food Bank and Family Services, specifically their computer lab and computer classes.

I feel fortunate because the computer classes to which I availed myself are on point and are aiding in my increasing daily skills and knowledge of all things computer. Jim and Ed are instructors. They are kind, professional and thoughtful helping computer students navigate what can be challenging and confusing when one is learning computer skills.

What is more, the computer lab is run by Mr. Jamie Estrada-Zambrano. This gentleman is most gracious and professional. Mr. Estrada-Zambrano maintains a very up to date job board. Also, he promulgates new job notices based on his knowledge of our backgrounds, and what a person is seeking relative to future employment. I appreciate his helpful and courteous manner. He challenges to be our best and not give up.

I would certainly recommend Sacramento Food Bank and Family Services to anyone seeking to increase or learn new computer skills. And the computer lab is an excellent place to discover jobs and then apply for them. It is pleasant also to use well-maintained computer equipment. That makes a world of difference.

Regards,

Douglas Stevens
916.671.2787

DES Action USA remains a lifeline for those of us exposed to what was prescribed as an anti-miscarriage drug. DES didn't work but caused health issues for the mothers given it, the children born of those pregnancies and their children (and possibly on into future generations).

We are the unwitting guinea pigs showing harms caused by synthetic estrogen exposures. DES Action advocates for vital continued DES research that benefits everyone in a world saturated with environmental estrogens.

But for me, and all others who live with DES - this organizations shares accurate, timely and useful information to help me negotiate the difficult landscape of staying healthy in the face of a synthetic hormone exposure that happened before I was born. I trust what DES Action reports and especially look forward to reading the newsletter. There's plenty of information out there but no other resource I trust as much.

This group has worked tirelessly for over 30 years to identify the side effects and long term effects of the drug millions of mothers were given to prevent miscarriage. I applaud their continued efforts to address the problems this nefarious drug is causing for 2nd and 3rd generation progeny of those unfortunate women.

DES Action USA has been there over the years for all the women and their families who have been effected by DES. In a world where it is hard to find new information about DES, let alone personal information about our own health, DES Action's VOICE newsletter has been a lifeline. They are consistent year in and year in keeping us up to date, and I am loving their new membership section of their website. Thanks DES Action!

Did your mother take the drug DES while she was pregnant? If you're a DES Mother, daughter, son or grandchild, then you'll want to join this thriving online community. DES Action posts news and updates on current research all focused on the lasting effects of DES.

DES Action has been a great resource for those of us dealing with the fallout of big pharma pushing DES to our parents and grandparents. They do a great job with the newsletter -- the articles are timely and well-researched. And the website improvements have made staying informed even easier. Thanks for connecting and educating all of us, and thanks for all you do!

I am a DES son. Here are the benefits listed on the website of being a member:

BENEFITS OF MEMBERSHIP

DES ACTION VOICE NEWSLETTER
VOICEbanner[1]
The DES Action VOICE newsletter keeps members current on the latest research and provides reviews of pertinent books and articles. This respected publication, which goes out four times a year, is a “must read” for those wishing to stay informed about DES issues, including clinical, research and legal matters.

DES DAUGHTER ONLINE SUPPORT GROUP LISTSERV
This is a popular Member Benefit specifically for DES Daughters. The group connects them via email messages on a safe, secure and private system. We share ideas, suggestions and support regarding the very personal matters that come up for DES Daughters.
There is something wonderful knowing others are dealing with the same issues and concerns. We learn from each other. To join this listserv, first join DES Action USA.

DES DAUGHTER TOOLKIT
Here is an invaluable resource to help empower DES Daughters to better communicate with their doctors and advocate for the health care they need.
Too many doctors either don’t know about DES exposure or have failed to keep up with the latest research. The DES Daughter TOOLKIT provides important DES information in a user-friendly format for doctors. It’s all available here on this website, but by combining it in one document the messages about increased medical risks and proper screenings are readily conveyed.
It empowers DES Daughters. Hand the TOOLKIT to your health care provider and it does the explaining about DES for you!

ADVOCATE FOR CONTINUED DES RESEARCH
You can’t do it by yourself – but together we can. Without DES Action’s push for research and advocacy for continued funding, it would not have happened.
DES Action stays in touch with scientists about their DES studies and keeps them aware of health issues being experienced by those of us who were exposed to DES.

SUPPORT DES ACTION
By doing so you join thousands of individuals who recognize the importance of having a powerful voice for the DES community. In return, you stay informed and feel good about supporting an important cause.
No one else will do it for us.


This group claims to be an advocate for those exposed but cannot list one benefit of membership for DES sons. When I sent them a letter in 2002 asking them to refer me to a doctor they replied that there are none capable of treating me. When I sent them an email in 2012 with the same request I got the same answer. In other words they have done absolutely nothing for DES sons in the past ten years...

I am a 56 year old DES Daughter and have been a member of DES Action USA for many years.
DES Action is one of the truly "best of the best" non-profits whose value simply cannot be measured. Always a source of timely and accurate information, it provides a "go to" resource on issues and concerns that are unique to those of us whose lives have been irreparably affected. I am extremely grateful to this organization for all the good it has and continues to do on our behalf...

Executive Director Frances Howell and her staff -- as well as those who founded the organization many years ago -- deserve sincere and continued thanks, kudos, and recognition for all they tirelessly do on our behalf. I am forever humbled and grateful for your existence.

It cannot be overstated how important DES Action is to those of us who have been affected by DES Exposure. The organization is educational and supportive, two of the most important qualities to anyone who has been touched by a medical problem. Moreover, I find that the organization strives to improve and keep up with the latest information and issues, while always keeping the personal touch. We are blessed to have DES Action.

I am a 59 year old DES daughter who has followed DES Action USA from the beginning. I was first informed of my exposure in 1971 at age 15 by my mother. DES Action has empowered us both to seek out the best medical care that we can find. We have both shared information published by DES Action with our doctors, including gynecologists, primary care physicians, dermatologists and dentists.

This organization is near and dear to my heart. Thank you to those who work and volunteer at DES Action to do so much for all of us.Thank you to my DES sisters, and brothers, who share their journey and knowledge with one another. DES Action USA is a clearinghouse of information about DES itself, studies about the long-term effects on us, and other available resources. Most of all, DES Action USA affords us an opportunity to connect with other women, and men, who offer support and caring as we deal with those effects.

pam '55, CA

DES Action has educated me and guided my treatment protocol ever since I learned I was exposed in utero to the carcinogen DES. DES was the first synthetic estrogen and was given to my mother in 1958 to prevent miscarriage. She later discovered, to her horror, that this drug did NOT prevent miscarriage. But it DID cause a rare form of cancer in the young daughters of women who had taken it. Since that time, in great part owing to DES Action's untiring efforts and dedication, DES has become a well-known and much studied endocrine disruptor that has a myriad of harmful effects. Not only has their research and support helped countless women (and men) exposed to DES, it has also served as the foundation for much of the modern-day studies into the harmful effects of estrogen-mimicking drugs and other chemicals, such as plastics made with bisphenol A. Please help DES continue their good work!

I am a 60 year old DES daughter who relies on the information from DES Action for the most accurate, up to date information about how DES has impacted my life, what to discuss with my doctors, and what to consider when making important decisions about my health. It is the only resource I have found that addresses my concerns, continues to seek the latest research, and shares the stories of a multitude of people affected by DES. I would feel uninformed and isolated without this tremendous organization. I support it's mission, and hope that all DES exposed patients can continue to use this wonderful resource.

I am a 64 year old DES daughter who depends on the information that I receive from DES Action USA. I am forever grateful for the service they provide to us.

DES Action has been there for me and other persons exposed to diethylstilbestrol (DES) for decades now since the DES tragedy unfolded in the 1970's. They are the first place I turn for information and support. I have been a member since the first day I found them following a troubling diagnosis. I have served as Volunteer and Board Member. The people at DES Action are the most caring, supportive, hard-working by far of any non-profit for which I have served or been a member. I strongly recommend they be given top honours as a truly GREAT Nonprofit!

I am the mother of a DES Daughter who is 48 years old. I have been connected with DES Action USA for many many years, and I truly do not know what I would do without the support I have received from them through the years. In addition, they provided me with literature so I could take it to high school, college, and other places to get the word out about those exposed to DES. This is a 'great' organization who helps numerous people. I have called them on a number of occasions and they have always taken the time to discuss my concerns. I can't praise them enough for the work they do for DES exposed.

I'm from Ontario, Canada and became a member of DES Action USA after the Canadian office was forced to close. I don't know what I would do without this wonderful group. Because of this fantastic not-for-profit, I receive up to date info from the DES Action itself, the newsletter The Voice and the List Serv.

I don't feel so isolated because of the support of DES Action USA.

I am so very grateful for DES Action USA. I live in Canada and depend on them for updated information through the website and newsletters. I also benefit greatly from their online community to speak with other women also affected by DES exposure. They have been a life line for me since the diagnosis of Breast Cancer back in 2007 and possible links between DES exposure and Breast Cancer. I have concerns for my daughter and how my DES exposure will affect her. I am grateful that there is information provided in that area as well. I feel empowered to know there is an organization there that has my back, it alleviates some stress. I don't know how I would feel dealing with this all by myself. DES Action USA is a real comfort to me in my journey of health.

DES Action provided me the information I needed 20+ yrs ago when I too found out I was DES exposed. With their information and guidance, I received referrals for DES medical professionals and attorneys. Because of the info received, I know my 2 ectopic pregnancies, infertility, and t-shapped uterus were caused my my mother taking DES. I continue to read the DES newsletter for up-to-date information . Because of DES Action, it's at least a comfort to know I am not alone as a DES daughter.

DES Action is a one-of-a-kind organization. For those of us exposed to DES when our pregnant mothers took it to prevent miscarriage, there is no where else with such comprehensive information about the health effects of our exposure. Drug companies do not want to deal with this issue. Doctors often lack current information. If not for DES Action's information and listserv, I would be ignorant and isolated with my questions. I wish that every nonprofit was as effective as DES Action.

DES Action has been there for me for years. Information, support, advocacy and action! Everything a non profit should be!

I have been a member of and supported DES Action for over 20 years because it is THE place to get information about this horrid synthetic hormone. The staff and volunteers are knowledgeable and have developed excellent relationships with researchers looking deeply at the cancers, fertility, and other health concerns that exposed women and men endure. Many physicians remain uninformed about DES; the Action Network provides a unique and invaluable service to them, too.

Without the information we have gotten from DES Action, my younger sister and I wouldn't have known how to react to the diagnosis of DES exposure. My younger sister had 2 bouts with cancer and died before her 35th birthday. We were lucky to have had her that long.
Our mother had taken DES to prevent miscarriages since she had 3 of those. She lived a long life and supported our efforts. She was instrumental in getting our records before they were destroyed by the Army. We were lucky to have written proof.
DES Action provides quarterly newsletters along with email blasts. The new toolkit they created will be handy at my next well woman exam. Without their pressing various agencies and the government, we would still be in the dark. New research has shown the long term effects of DES on our bodies. Without DES Action, we would be voiceless and helpless! That is not an overstatement of the facts.
Thanks.!

Without DES action, information about this drug would not reach the mothers and daughters who have been devastated by the affects of taking it. Good work DES Action!

DES Action is a 5-star organization. For over 25 years, it has always been there for me answering my questions, educating me about DES, and giving me the info I need to get the best possible health care available. It publishes a monthly newsletter entitled DES Action Voice which provides the latest info on DES. DES Action has been a real lifesaver for me and a support vehicle--I know that I am not alone in facing the DES challenge.

I am a 64 year old female and a DES daughter. My first child was born 10 weeks early and thank goodness a vigorous premie who thrived. The DES news broke about one year after his birth, at least in my mother's world. I felt so sad because she felt so guilty, yet someone prescribed her that drug. I had a second child born 3 weeks early, plus a third pregnancy that ended in a 2nd trimester miscarriage. I from the start had vaginal adenois, now severe stenosis of the cervix requiring anesthesia twice to have a uterine biopsy's in my late 50s. I also have an autoimmune disease Sjogen's Syndrome and so did my Mom. I feel a correlation does exist.
DES Action has provided such a wealth of information over the years, plus so supportive to all affected. I have been supporting them for over 35 years and will continue to do so.

My life was turned upside down when, at 46 years old--I learned I was a DES daughter.

Amazingly, I had many medical clues over years of medical care but no physician ever put the pieces together, and neither did I.

Then I was diagnosed with a host of pre-cancerous signs. At the same time, I stumbled upon DES Action because a friend had heard of DES's terrible effects on women exposed.

Top-notch physicians at a major university medical center knew shockingly little about DES effects and doubted any connection.

However, decades old medical charts and DES Action resources proved my case and changed my treatment to something appropriate and ultimately life-saving.

I could not have gone through this without them...

I am a DES father and I have watched with deep concern my daughter's undeserved health problems including her unavailing struggle to bear a child. I have found that DES Action gives me the assurance that she at least has all available information as to how best to handle the complexity of her condition.
It is reassuring to know that she is not alone and has the backing of a well run organization.

As a Des daughter I have found Des Action National to be a wealth of information, support and knowledge. They have been "there for me" as I faced infertility and a hysterectomy during my 20's. There continued research still provides medical information to pass to my own health care providers over the years. Keeping the issues of DES in the public eye is important to on-going research and the health of many des mothers, daughters, sons and into the next generation. Kudos.

Because of Des Daughter Network, I was made aware of Des National Action, a determined group dedicated to the victims of this menacing and debilitating drug. On their limited budget, they provide a wealth of information, compassion and support. Although I am not affected personally, I have been moved to share my praise for this organization with others who can certainly benefit directly, and others who can help me spread the word and support Des Action National in return.

I am not a DES daughter. But I have been involved with this excellent organisation for many years and have seen the hard work everybody puts into helping all those who need advice, empathy and understanding in dealing with this dreadful drug that has affected all aspects of their lives. I have been able to write a book, fictional but built on the facts about Diethylstilboestrol (Stilboestrol ). By producing this book I hope to be able to spread the word for all DES Daughters and Mothers in a way that is a good read and yet gives all the facts without being didactic. Ten per cent of royalties will go to the charity - which is always in need of funding to carry on with the brilliant work they do. Here's the book: http://www.amazon.com/Silent-Trauma-ebook/dp/B00AFZ8CLO

DES Action continues to be an amazing little organization. I am consistently astounded what the staff does and the quality of the information provided to the DES community on their small budget.

This organization has been a life-saver for so many affected by DES. They consistently make DES issues a focus of research and it seems that each push results in more findings and the need to keep digging.

In 1972, My mother told me I had been exposed to DES in utero and would need to be monitored for life for a variety of health issues. Shortly thereafter my mom found DESAction and I was a member for many years. Over the past 10 years I have found my DES exposure has 'caught up with me' and I have had many health issues to deal with related to my DES exposure. DESAction has been there for me all the way. When I feel so alone and with an uphill battle they have been there for me with up to date information and support. An awesome organization who work tirelessly to help DES exposed women.

DES Action National has made all the difference to me over the past year, following a lifetime of feeling totally alone and confused regarding my DES daughter related conditions. My initial contact was warmly received: I immediately was sent pertinent information, in a form I could share with my doctors. The quality and format of this information inspired my doctors to feel confidence in DES Action National too, which is vital, because very few doctors understand as much about DES daughter status as DES Action National does. So this organisation has actually helped me collaborate with my doctors. CThe solidarity I have found in DES Action National forum discussions has been hugely comforting and empowering. The forums are sensitively and scrupulously monitored by knowledgeable members, which makes me feel it is safe and appropriate to join in deeply personal and intimate exchanges on difficult and sometimes embarrassing subjects. DES Action National archives include a wealth of important information in an accessible, digestible form. All in all, it simply isn't possible to praise this organisation more highly. Thank goodness for DES Action National!

DES Action is a nonprofit - but more importantly - it's a group of dedicated, caring and compassionate people. The Board of DES Action works tirelessly in the legislative, medical, and education arenas to help people understand the ongoing tragic legacy of those exposed to DES and their offspring, and their offspring. DES also is a very personal network of people helping others to understand our medical issues, share our strength, and come together when another DES tragedy hits. I wish I knew about DES Action a long time ago. I love this organization and get so much from it. Thank you DES Action!

I am new to this organization. I have spent my whole life dealing with the effects of DES and have felt alone. I have really enjoyed the sharing of others and the knowledge i have gained.

My only regret is not knowing of this organization sooner-I am a DES daughter and after years of issues, surgeries and now a full hysterectomy, I am changing my lifestyle, advocating for myself and my needs related to my DES exposure. This will now carry on to my daughters as they will deal with possible ramifications of my DES exposure. What a gem this site is! Knowledge is power! Chris/1961

Those of us who were exposed to DES in utero have a variety of health issues, causing us to be affected physically and emotionally. While a little knowledge can be a dangerous thing, DES Action is the antidote to that. The organization provides us with the most up-to-date information so that we can make informed decisions, as well as giving us a safe place to share our experiences with others who understand what we are going through. They are tireless in their efforts, and the support I feel as a DES daughter is incalculable.

DES Action has been my go-to organization for over twenty years. It's seen me through three high-risk pregnancies and now menopause as a DES daughter, providing both me and my doctors with the most current medical information. Whenever I encounter a new health issue that could be related to prenatal exposure to DES, it's the first place I turn. I count on it for the latest and most accurate information for my children as well as myself. DES Action also provides a place for those affected by DES to share our experiences, providing valuable data for ongoing research.

DES Action is my go-to place for DES information. As a DES daughter I have to watch out for my health and DES Action has given me the tools to do that. I appreciate their advocacy efforts.

DES Action is a candle in the dark for me. As a 58-year-old woman with all the classic signs of DES exposure, DES Action has always helped me understand my odd test results, medical procedures, and my feelings of rage at being injured before I was even born.

I'm a French DES daughter born in 1971. DES Action USA provides invaluable support and advice to the many victims of the DES drug scandal not only in America but in many other countries such as the UK. The work that they do to identify, educate, provide support to, and advocate for DES-exposed individuals as well as educate health care professionals is critical as the effects of this carcinogenic drug continue to be seen. Health risks associated with DES exposure continue to be identified in DES-exposed women as they age as well as in their offspring. Animal studies have shown effects in the next generation (grandchildren) through the multi-generational effects of the drug. More research and funding are critically needed to support this generation. With years of experience in advocating for the DES victims they also provide invaluable resources to DES groups and individuals who combat the adverse effects of DES and the wall of silence around DES issues in all corners of the globe where DiEthylStilbestrol (DES) was also prescribed to pregnant women. I'm grateful for their support and the work that they do on behalf of all DES victims and their families.

Don't forget DES Action USA has international partnerships with other DES Action groups!
As a resource they are invaluable for groups overseas. For me in Australia, their service in delivering accurate information about DES is prompt and reliable.

I am a DES daughter born in 1951. DES Action is an excellent organization for those of us who have been exposed. Not only does it provide excellent information on DES exposure and its long term effects, but it also is a staunch advocate for DES mothers, daughters, sons, and grandchildren. The money I have given this organization is well worth every penny.

I suffered DES exposure when my mother unknowingly took a drug she was told would save her pregnancy. My exposure in the womb resulted in my female and infertility issues as I grew to womanhood. This group has served as my best source of information and support as an adult, as well a providing a safe place to express concerns and feelings with intelligent, well-sourced women and their families as we learn and inform together.

As a DES daughter DES action has provided me with the information I needed to put the pieces of this confusing puzzle together empowering me through information.

I learned of my DES exposure rather late in life when my health took a drastic turn. Thanks to the resources of Des Action I became well versed in the terrible side affects that I had been experiencing all my life.As a result I was able to advocate for myself the proper care that was necessary to deal with these life threatening episodes and have found a doctor who is up to date with the risks involved...a rarity these days. It seems to me that the very same drug companies that are so ardently looking for the "cure" are the very same ones who gave us this curse to begin with.The drug companies have done a great job of keeping the past secret. DES Action has been the only active group to keep this alive...The drug companies don't want us to remember...DES Action won't let them forget. Pam.

I'm a 50 year old DES daughter, breast cancer survivor, and mother of a 19 year old DES granddaughter who has already had a benign lump removed. I truly appreciate the up to date information that DES Action provides. I visit the site regularly to find recent research. Thanks for keeping me up to date!

I am a 54 year old DES daughter.who lives and was born in Ontario, Canada. DES Action in Canada closed several years ago due to lack of funding. Because of DES Action National, I am able to connect with other daughters, discuss health issues and keep current on issues that affect us personally. I feel less alone because of this group. We receive a quarterly newsletter "The Voice" and I look forward to receiving it. I can't imagine what would happen if DES Action ever closed, it's totally beyond my comprehension

I was born in the USA in 1951. My mother had already lost two full term babies and, as DES was all the rage, she was put on the drug by her doctor. Mum always had this underlying feeling that the drug was not quite "kosher" and, fortunately, this meant that I had regular examinations from the age of about 17. It became quite obvious in my 20s that my anatomy was DES affected. By my 30s it was apparent that I would not have children naturally. Had it not been for DES Action there would have been no organisation that I could turn to for information. Knowledge is power they say: well in my case knowledge did not give me children but having my circumstances explained with humanity and clearly saved me from deep depression and from spending - more - money on treatments that had only a miniscule chance of working. The Action group has been a constant source of support which I still turn to even in my 60s. My very best to all of you, and great thanks to DES Action.

I was in my 30s when I miscarried, over and over, for reasons I didn't understand until a doctor told me I had the "classic presentation" of a DES daughter. My mother, however, didn't think she'd ever taken this drug. But I remembered being given it as a teenager to stunt my growth--a popular practice in the Sixties, Seventies and Eighties to prevent tall girls from growing "too tall." I turned to DES Action's Pat Cody, the organization's late founder, for help. What was happening to me? What would happen to me? She offered tons of information as well as her own gut feeling about my double exposure to this toxic drug. She was a life-saver. Now DES Action works hard to help mothers, daughters, sons, and grandchildren with the same sorts of questions. DES Action is there to help when those people, like me, need help understanding what this drug has done to them and what they can do to protect themselves in the future. They do not accept money from drug companies, which for decades have denied responsibility for the tragedies DES-exposed individuals suffer.

Diethylstilbestrol DES was a horrible drug. It was prescribed to millions of unsuspecting women without any thought to the harm (cancer, infertility, etc. ) it would do even though there was evidence that the pharmaceutical industry knew it would cause harm. The resultant damage impacted not only the female offspring of these “moms-to be” but also the male offspring and now grandsons.
Were it not for the diligence and tenacity of DES Action and Pat Cody, this type of travesty would likely continue today. DES Action helped me SO much after it was identified that I had been exposed when I was 15 years old.
DES Action is instrumental in fostering continued research and education for those of us impacted. Another example of their phenomenal support is the CDC Awareness campaign to ensure that not only are the victims aware of the repercussions but also the newly trained medical professionals.
DES Action’s reach is worldwide and they deserve funding like no other organization or charity I support!

It's all about education and the truth. DES Action has armed women, men and their children with the most up to date health information on the affects of exposure of his horrific drug. My respect for this organization knows no bounds. We have been fighting the good fight since the 1970's and will continue to do so - as long as there are people who are vulnerable. DES Action has truly written the book on health care advocacy - and standing up to the pharmaceutical and health care corporate interests. Without them the truth would never have been exposed.

It's incredibly reassuring to have this organization which provides information on DES issues of all sorts, and advocacy in many arenas for research and actions that improve our lives and health. And day to day, I feel connected to a community of real people who are going through DES-caused medical and emotional issues just like me. I don't feel bewildered, isolated and alone with my own medical problems and questions as I did in earlier years before I had DES Action and its email listserve. Would that every person with a rare medical condition had a group like this! Thanks to all who work to make it so good.

2 of my 4 babies died because i could'nt keep them anymore in my uterus..thanks RÉSEAU DES, i have success to stand tall...

I found out I was a DES Daughter when I was 18 years old. Friends didn't understand and boyfriends just wanted to be friends when I told them. I was going to a doctor who said she was DES knowledgeable but then took 10 biopsies which seemed very extreme. I connected with DES Action and received a doctor's list that other DES daughters recommended. The doctor I choose from the list was wonderful. I have connected with DES Action many times in the past twenty-five ish years. It is so nice to know that there are other people out there just like me and I look forward to getting my newsletter four times a year. I feel like questions and concerns are being answered. I am so scared that one day when I go in for my gyn checkup that I will be told I have the rare DES cancer. It is comforting to know that I will have a place to call and get information "if" that ever comes.

I found DES Action online about 1 1/2 years ago. Up until then I spent much of my life not knowing what was really wrong with me. My mother was given a pre-natal vitamin that contained DES. Her Doctor never told her it was more than just a vitamin. He simply dispensed them to her in his office. No prescritiption, so as far as she knew, she never took any "drugs" throughout her pregnancy. On top of that, her pre-natal care records and my birth records were destroyed in a fire. Until my early 40's I had no name for my problems and I had no idea why I was so defective. For decades I hated going to the Gynecologist. Many told me pregnancy would be difficult if not impossible, A few even suggested scary sounding treatments. But none of them told me why. I was so scared and felt like I must be the only one like me out there. Through DES Action, I not only found others like me, I learned that I was a DES Daughter and that there are other health risks including an increased risk for breast cancer that I may face as I age. I have found this organization to be so valuable and I am so glad it is there for me. It is sad to think there are still women out there that do not know of their exposure. There is so much more we have to learn and DES Action is playing a vital role in ensuring the research continues and the exposed get the information they need to make the best decisions when it comes to their health care.

I am a DES daughter, had my complete hysterectomy at age 18. I thank God I found this group. I was alone before, knowing DES had ruined my life. But now I'm not alone any more, I don't struggle wondering if there is anyone else like me out there. They are here for me, especially Fran. She opened a world of knowledge and information about DES to those of us afflicted with this deadly life changing pharmaceutical poison. Our mothers felt guilty for maiming their children, many not knowing how to explain to their own children the cause of their infertility and health maladies associated with DES. I've been a member for quite a few years, got sicker unable to donate any longer . . it took me awhile to write and let Fran know I was living below poverty level, and suffering with continued maladies. Fran knew I couldn't pay for the news letter and out of the goodness of her heart, she never forgets me. I'm 55 now, childless with few family members left. But I know if I ever needed a kind heart, a willing ear to listen to my heart ache, complaints and woes, Fran and everyone on the DES member list would welcome me with open arms. Thank God for DES Action. And I know there are more DES daughters, sons, and 3rd generation people out there who have no idea this group exists. I pray they find us, and don't hesitate to read, educate and commune with those of us who live with DES tragedy daily.

I have a dear friend who is a DES daughter and to see how this effected her youth and now has altered her adult life is inspiring. She is always available to help and support and I credit her volunteerism with educating me and so many others about DES and what it means. The warmth and support that she reaches out with is truly a testament to the value of resources such as this. Keep up the good work!

I discovered in my early 20's that I'd been exposed to DES. Terrified, and without the benefit of my mother to guide me (she died suddenly at age 48), I desperately searched for any information I could find, which was extremely little. The doctors were uninformed, for the most part, also. I was blessed to locate an oncologist/DES researcher, who told me about DES Action. I was immediately impressed with the informative, thorough articles. Because my mother was given one of the largest doses prescribed, throughout most of her pregnancy, I was born with a more unusual reproductive structure than most DES exposed women, causing a number of health issues. I've learned that I've had to be my own health advocate over the years, and DES Action has been a reassuring and expert resource. DES is a life long issue. I am so very thankful to know DES Action is a voice for us, providing resources and advocacy!

Being a DES daughter is something that never goes away. I have worried about the side effects and health risks I would be facing since I was about 18. Now that I am 55, we are finding out that the health issues related to DES exposure will continue for a lifetime. DES Action National has been the greatest source of information for me. I had all the fertility issues, then the hysterectomy and now worry about my increased risk for breast cancer. When I need to know the facts, this is where I come. I am more informed and better prepared to protect my health because this organization makes information available that is not available elsewhere. I can count of Des Action to provide the information I need to be an informed and proactive about my healthcare.

DES action is a vital organization, not just for women who, like me, were exposed to this horrible drug and have had to deal with the consequences, such as a son's prematurity, and will have to deal with unknown future effects, such as increased breast cancer risks. It also serves a vital role for health care providers. Sadly, I find that physicians frequently do not know much, if anything, about DES exposure, and thus I was classified as not high risk when pregnant with my first child. I still encounter OBGYNs who do not know any more what DES is or wave it off as something that was only prescribed in the fifties. But besides this key function, DES Action also helps inform the larger public about the risks of chemical exposure during pregnancy and beyond (particularly of endocrine disrupters), which is highly relevant to everyone and shows DES to be a crucial case study with farreaching implications.

When my mother told me her doctor had prescribed her diethylstilbestrol (DES) to prevent a miscarriage while pregnant with me I was stunned and wanted to learn more. Finding DES Action USA was such a relief because it provides accurate information about DES exposure. It also helps me know that I'm not alone. Millions of Americans have been harmed by DES but you can't look at someone and see the damage. It's primarily in our reproductive systems leading to a specific type of vaginal/cervical cancer, infertility and breast cancer among other issues. Learning about DES explained a lot about what has happened to me through the years. Now researchers are looking into the possibility that so-called DES Grandchildren may have health problems relating to this drug prescribed to their grandmothers! I trust the information provided by DES Action, which pushes for continued DES research and informs those of us who should know about special health screenings to protect our health. Where else would I turn for information if DES Action didn't exist? I was so pleased with this small organization that I got involved!