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56 Reviews
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October 17, 2013

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1 previous review
November 7, 2012

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 be... more

October 17, 2013

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!

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

November 7, 2012

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.

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When was your last experience with this nonprofit?

2012

September 19, 2013

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September 19, 2013

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.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

September 19, 2013

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September 19, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Love to see it get more funding and publicity.

More feedback...

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?

2013

September 19, 2013

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September 19, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

None.

More feedback...

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

September 19, 2013

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1 previous review
November 8, 2012

I am a 58 year old DES daughter. This organization has provided life-saving information as well as unmitigated support in good times and in bad. It brings us all together so that we can support each o... more

September 19, 2013

Unsurpassed for support and supplying information. Couldn't live without it.

Ways to make it better...

If I had to make changes to this organization, I would...

I would make sure it had the funding it needed to continue the good work it currently does.

More feedback...

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?

2013

November 8, 2012

I am a 58 year old DES daughter. This organization has provided life-saving information as well as unmitigated support in good times and in bad. It brings us all together so that we can support each other too. I sincerely don't know what I would do without this organization.

More feedback...

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

September 19, 2013

more


1 previous review
November 10, 2012

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 ... more

September 19, 2013

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...

More feedback...

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?

2013

November 10, 2012

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.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

September 19, 2013

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September 19, 2013

As a DES daughter DESAction is the first place I turn to for health information. When I've had unique issues, I have called or written them asking if they know of others with those same health issues. I've always received a quick and accurate reply, often with a referral to a doctor who might be doing research in that area. DESAction has created a community for those damaged by the medical community and has empowered us to demand and receive research on our issues.

Ways to make it better...

If I had to make changes to this organization, I would...

Increase the staff in order to offer more services -- gathering and disseminating information, conducting independent research, etc.

More feedback...

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?

2013

September 19, 2013

more

September 19, 2013

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.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2013

September 19, 2013

more

September 19, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

None

More feedback...

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?

2013

May 11, 2013

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May 11, 2013

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.

More feedback...

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?

2013

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