Like others, mom was given DES in 1955 to stop a miscarriage. I was born with multiple birth defects particularly to my urinary tract and reproductive system. That was only discovered when I was six and continuous high fevers (later discovered to be from infections) sent me into convulsions. By then one kidney was totally destroyed.
Years of corrective surgeries followed, including some where my heart stopped. Then wheelchairs and missed years of school to recover from scar tissue removal.
I was told I’d never get pregnant. So I never thought about it when I married. But at age 33 I found out I was when I was already 5 months along!
The doctor warned she might suffer the next generation effects of DES as well. She didn’t - but my second daughter did.
Luckily, because so much research had been done, she was put on antibiotics prophylactics for her first four years to prevent massive infections while her urinary track corrected.
I’ve had so many other health issues - heart problems, autoimmune issues, scoliosis, that no one else in my family had, I’ve always wondered if any were related.
My whole life was changed because of DES. I am still disgusted no one has had to atone and be held accountable.
So glad I found this group last year.
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 DES Action member for many years. This organization is indispensable for the DES-exposed, providing up to date medical information, doctor lists and support. So glad they exist!
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 has always been there when I needed support, from the time I found out I was DES-exposed, through cancer fears, pregnancy challenges, and premature deliveries, to the present, by keeping us informed of continuing impacts on multiple exposed generations and continuously calling for more research.
As a DES Daughter born in to an ethnic family, at home I heard "Don't tell anyone! No one will want to marry you!" DES Action and its members in my hometown were a lifeline for me in those early days as a source of invaluable information and support. I am proudly serving on the Board today as a way to give back a little of what I have been given from this transformational organization.
Excellent, helpful and there when you need them whether for big or small things.
This organization provides much needed information and support to DES daughters all over. I don't know what I would do without it and it's members.
DES Action has, over the years, furnished accurate information and compassionate assistance to all DES survivors and allies. Now it continues to do so for the third generation and beyond.
DES Action tells the truth and the whole truth. Most other sources of information continue to give misinformation, such as implying that DES has ever prevented a miscarriage. DES Action is a strong and unique source of support for people who are DES affected, for the people who love DES sons and daughters, and for the medical practitioners who treat DES sons and daughters.
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've been a member of DES Action since my early 20s, quite a while ago :) their newsletter has updated me on research and, sadly, new discoveries of the harms that DES caused. It has given me friends and supporters. I look forward to being a member for decade more!
DES Action is the only non-profit that "identifies, educates, advocates for and empowers the DES exposed population. Their benefits are many:
Searchable Doctor Listings — DES aware doctors in your area.
Monthly eMail Alert — News and updates every month in your eMail box.
Quarterly VOICE Newsletter — The VOICE documents the history, the science, the new research, and the personal stories of DES.
Attorney List — A list of knowledgeable attorneys DES Action members have shared.
Exclusive Content — Expanding collection of articles and videos accessible only to current DES Action members behind our members tab of the website.
*New! Stupid Cancer App — Offers online opportunity to seek support or provide mentorship to other DES exposed, with or without a cancer diagnosis. Allows you to choose who you communicate with. Currently available for IPhone, and Android app.
*New! Library of Facebook Live Events — During our 40th anniversary year, and going forward, go to our DES Facebook page to “attend” talks by authors, researchers, and advocates of interest to the DES community. Ask questions, get answers live! Can’t attend…no problem, view the videos available to members on DES Action website after the event!
DES Action USA on Facebook* —“Like” DES Action USA on Facebook and follow us on Twitter to stay up to date on medical and environmental health news that affects you, your loved ones and the planet.
Online Support Group for DES Daughters — A safe private community of DES Daughters where you can compare notes, share doctors’ advice, and resources, and gain knowledge on issues that affect DES Daughters during different phases of life via our email listserv.
Toll free number — (800) 337-9288
DES exposure is a lifetime watch, and research is ongoing on how it impacts DES exposed. You won't find information in the news, so this organization is the watchdog, and has contacts with the researchers, and can advocate for you, and help you get what you need from your doctors. I can't say enough about them. It is because of them and their work that DES exposure and the millions who were medically and emotionally impacted are still getting the attention they need!
As a DES Daughter, who was fortunate in having two live births, resulting in two healthy children after many worries, anxiety and being bedridden during both pregnancies as a result of my DES exposure, in utero, in addition to many other DES related conditions; I continue to worry about my children and their medical futures, and my mother, who is still living with many medical problems. Research must continue into the 3rd generation and also my generation, with still unknown risks and medical conditions. DES Action has been the one organization that I can trust to get vetted information that is based in research. It also has a wealth of resources on the website, and there is a support group listserve for those who wish to participate. DES exposed individuals are everywhere: I met someone in my gym, at my hairdresser, and at a lecture I attended with 25 people in attendance. Of those 25, 2 people came up to me to tell me of their family's DES exposure: mind you, the lecture was not on DES, but on breast cancer. DES exposure is not rare, yet if DES Action USA weren't there for us, the medical community and community at large would let it recede into the background. It is not a dead issue and DES Action keeps it alive! DES Action is also now going to provide counselors via telephone. This is a much needed service as DES exposed individuals are dealing with medical conditions, diseases and emotional trauma. What of the 3rd generation? The future is unknown and we must continue to rely on DES Action USA to be there for us!
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.
I came across this organization doing a Google search after reading an article about women who have been impacted by DES as their mothers took the drug. It provided a lot of good background info on the synthetic hormone itself and how it can be harmful to women who took it as well as their offspring. The organization is geared toward the children of mothers who took DES and provides resources and a community of people who are also dealing with the aftermath of DES.
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.
A dear friend recently revealed to me that she is a DES Daughter. Her mother had been given the drug DES while pregnant. This left her with a number of serious medical conditions, including infertility. I discovered DES Action and told her about the kind of support it provides to the DES exposed community. She became a member and says that joining DES Action has provided her with incredibly valuable information about her health.
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!