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DES Action USA

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Nonprofit Overview

Causes: Cancer, Health, Public Health

Mission: The mission of DES Action is to identify, educate, empower, and advocate for DES-exposed individuals.

Results: DES Action successfully advocated for continued DES research funding of the DES Follow-up Study carried out by the National Cancer Institute. We stay in touch with the researchers and share their results to inform those who need to know about health risks caused by DES exposure.

Geographic areas served: We are a national organization in the United States but we have members in primarily English-speaking countries around the world.

Programs: Our organization began in 1978 and provides information packets and doctor referrals for individuals exposed to the anti miscarriage drug, diethylstilbestrol (DES). We also have a newsletter providing accurate and timely information of interest to those exposed to DES, as well as a TOOLKIT for so-called DES Daughters (those exposed in the womb) - to help them communicate better with their doctors.

Community Stories

156 Stories from Volunteers, Donors & Supporters

5

Professional with expertise in this field

Rating: 5

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.

3

Donor

Rating: 5

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!

5

Volunteer

Rating: 5

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.

3

General Member of the Public

Rating: 5

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!

Review from Guidestar

1 Marcia31

Volunteer

Rating: 1

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...


3 Joan55

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

2 Pam B

Client Served

Rating: 5

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

Previous Stories
1

Client Served

Rating: 5

I have known about DES Action since it first began. I was made aware that I was a DES daughter when the first study came out in the early seventies. I was part of a group that became "examples" of what can happen to a DES daughter when at age 15 I was "on display" at NIH as a classic example of the malformations that can occur in the reproductive system. When I found my self unable to conceive a child after four years of marriage at age 30, DES Action Campaign became an invaluable source of information and resources for referrals. Thank you DES Action. Pamela B.

1

Client Served

Rating: 5

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!

1

Client Served

Rating: 5

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.

1

Volunteer

Rating: 5

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.

Previous Stories
1

Volunteer

Rating: 5

DES is a wonderful organization and I am proud to be a member of it. Since finding out I was a DES daughter back in 1975 I felt very alone and unsure what all this meant to my health. Now I depend on DES Action through its listserve and newsletter to keep my updated and informed on what I need to know and what to do with the information. We are unfortunately all 'time bombs' and none of us really knows what the future holds, but with DES Action I feel that I can keep informed of the latest information. The listserve is an important way to find out what other DES daughters are feeling and what problems they are having that are unique to being a DES daughter. I am very thankful for DES Action.

1

Volunteer

Rating: 5

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!

Previous Stories
1

Volunteer

Rating: 5

I have known I was a DES daughter since the early 1970's. But it never interrupted my life until the mid 1990's when my pap was "abnormal" and the treatment seemed extreme. So I sought out advice and DES Action was my lifeline to proper care. With their unyielding help and resources I am knowledgeable about my exposure and proactive with my healthcare needs. DES Action continues to provide me support and the knowledge ... and knowledge is power. They are truly generous of time and energy. I know this well as both a longtime member and a volunteer.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 Patti Negri

Board Member

Rating: 5

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

Donor

Rating: 5

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.

1

Client Served

Rating: 5

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.!

1 Chris93

General Member of the Public

Rating: 5

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!

Previous Stories
1

Client Served

Rating: 5

Until I found DES Action I never knew another mother that had taken this drug. Finding this informative organization gave me the courage to face whatever might happen to my daughter in the future because of DES. I no longer feel like I face it all alone -- there are so many other mothers in this with me. Thanks DES Action Chris V.

1

General Member of the Public

Rating: 5

I am a DES daughter. My mother and I have both been members of DES Action for decades. We read all the newsletters, which are full of valuable information. I've passed some of it on to my daughters, who are DES granddaughters. I've also participated in the organization's online and email forums. It's helpful and empowering to be connected with other people with similar problems, and DES Action has been a major facilitator of that.

1

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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...

Previous Stories
1

Donor

Rating: 5

At 45 years old my life was up-ended by a cancer caused by the medication DES that was so rare that experienced physicians at a the University of Minnesota didn't believe it was possible. DES action gave me the tools, information and contacts to make sense of a life changing event. I tell everybody who will listen about the effects of DES, the impact it has on women, and the shameful coverup and continued medical world denial and ignorance of so many affected women and families. There is so much to learn, and when you have to explain to an oncologist at a major universities clinic for gynecology what DES exposure actually does to a body (and not the misinformation they've gleaned from a brief mention in medical school), you know there's a lot of advocacy to be done....DES Action is the only voice I know of doing this work.

1

General Member of the Public

Rating: 5

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.

1 Maria76

Client Served

Rating: 5

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.

Kevin55

General Member of the Public

Rating: 5

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.

1 Judith19

General Member of the Public

Rating: 5

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

1

Board Member

Rating: 5

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.

Previous Stories
1

Board Member

Rating: 5

DES Action USA was my saving grace when I found it 13 years ago. Suffering health issues from the effects of my pre-natal exposure to DES they provided the information I had been seeking for years. They are the ONLY organization that serves the DES (diethlystilbestrol) exposed community. They provide support, accurate and un-emotional information about our continued health risks in The VOICE newsletter, doctor lists culled from other exposed individuals, attorney lists and have remained connected to the research community to ensure the DES exposed are not forgotten or overlooked. The organization is as frugal as one could ever imagine. They do so much with a tiny budget - it is truly amazing! DES Action is the only organization that I donate to who's information and communications I read in full every time I get something. It has been a lifeline for my health and my mother's health over the years because of their dedication to continued research and providing accurate information. Our family is so thankful for this organization, which was started on someone's kitchen table in 1978!

1 Carol83

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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!

1 Linda158

Donor

Rating: 5

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!

1

Client Served

Rating: 5

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.

1

Donor

Rating: 5

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

1

Client Served

Rating: 5

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.

Client Served

Rating: 5

I've struggled with the effects of my DES exposure, but DES Action has consistently provided me helpful information and a supportive sense of community since I learned of my exposure. I couldn't have navigated the confusing array of tests and procedures without the knowledge gained from this dedicated group. DES Action has earned my respect and undying gratitude.

Client Served

Rating: 5

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.

General Member of the Public

Rating: 5

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.

Elizabeth79

General Member of the Public

Rating: 5

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.

Des Daughter D.

Donor

Rating: 5

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.

James63

Client Served

Rating: 5

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.

Donor

Rating: 5

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.

Donor

Rating: 5

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.

General Member of the Public

Rating: 5

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.

Pam_32

General Member of the Public

Rating: 5

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.

Arline M.

Client Served

Rating: 5

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!

Patricia43

Volunteer

Rating: 5

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

Client Served

Rating: 5

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.

Board Member

Rating: 5

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.

Client Served

Rating: 5

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!

Molly18

Board Member

Rating: 5

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.

Donor

Rating: 5

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.

Réseau D.

Volunteer

Rating: 3

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...

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Wanda2

Client Served

Rating: 5

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.

General Member of the Public

Rating: 5

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!

Client Served

Rating: 5

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!

Client Served

Rating: 5

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.

Martine V.

General Member of the Public

Rating: 5

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.

Suzanne B. R.

Board Member

Rating: 5

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!