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November 7, 2012

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November 7, 2012

The news broke about the risk of a rare vaginal cancer for women exposed in the womb to DES when I was 19 - supposedly the peak age of risk. My normally peaceful mother was very upset when she called me at college to tell me. My mother's doctor had told her drugs wouldn't cross the placental barrier during her pregnancy with me. Now we know better - and that is due in part to the endless pushing and refusing to shut up and go away by DES Action. And they have never stopped pushing for testing and studies and legislation to get everyone the help they need. The effects of my exposure have been difficult but it would be harder if I didn't know why I had these problems. DES Action has been a lifeline of support and information.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 7, 2012

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November 7, 2012

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.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 7, 2012

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November 7, 2012

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.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 7, 2012

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November 7, 2012

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.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 7, 2012

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November 7, 2012

Finding DES Action was a blessing. Prior to finding them, my gynecologic experience was quite horrible. It is really quite amazing the number of doctors I saw that had no knowledge of what they were looking at, even though I told them I was DES exposed. Finding knowledgeable doctors with the help of DES Action put an end to useless procedures. (Many procedures, several surgeries.) Whenever I receive the newsletter, I read it right away. It is a wonderful way to keep informed about all things connected to DES. Actually, it is the only way I have ever found any real information about the myriad consequences of having been exposed to DES. Several years ago (2003) I did receive a binder from the CDC in regards to DES, although, it was because of DES Action that the CDC had this information compiled. THANK YOU DES Action

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 7, 2012

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November 7, 2012

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.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 7, 2012

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November 7, 2012

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.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

November 7, 2012

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November 7, 2012

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!

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

November 7, 2012

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November 7, 2012

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!

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 7, 2012

more

November 7, 2012

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.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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