Are you DES Exposed or have a family history of DES Exposure?

Posted by kmfdallas @kmfdallas, Apr 25 10:09am

DES Awareness Week 2026 has drawn to a close following a week of meaningful engagement, education, and advocacy. Several important initiatives highlighted the ongoing impact of diethylstilbestrol (DES) exposure and the need for continued awareness.

AARP hosted an educational program addressing DES exposure and its long-term health implications. The podcast “This Is My Brain” featured discussions related to DES, and an updated clinical resource, "Caring for the Diethylstilbestrol-Exposed Patient", was released to support the DES Exposed and healthcare providers. In addition, the Second Edition - "Voices of the DES-Exposed: Speaking Out" was published, amplifying patient perspectives. Newly shared personal and historical narratives were shared.

International contributions included messages from DES Daughters in France, and a podcast from the United Kingdom, reflecting the global scope of DES-related concerns.

Advocacy efforts also emphasized support for House Resolution 342 (IH), which calls for three key actions:

Establishment of a national DES Awareness Week

Restoration of funding for the DES Follow-Up Study

A formal apology from the U.S. Food and Drug Administration

The DES Info Association extends its sincere appreciation to members of the DES-exposed community who have shared their stories and photographs since April 2025. These contributions play a vital role in advancing understanding, support, and ongoing research.

Collectively, these efforts reinforce a shared commitment to awareness, patient care, and advocacy for those affected by DES exposure.

Interested in more discussions like this? Go to the Women's Health Support Group.

kmfdallas | @kmfdallas | Apr 27 10:30am

I am attaching the 2026 DES Pamphlet "Caring for the Diethylstilbestrol Exposed Patient". It is a good Pamphlet to share with your doctors.

Shared files

Caring for the Diethylstilbestrol Exposed Patient Pamphlet April 2026 (Caring-for-the-Diethylstilbestrol-Exposed-Patient-Pamphlet-April-2026-.pdf)

kmfdallas | @kmfdallas | Apr 28 11:05am

Here a few excerpts from Voices of the DES-Exposed Speaking out - Second Edition.

DES Daughter: I did have very painful periods. I had my left ovary removed when I was twenty-nine, as it was covered with cysts which had burst. When I was forty, I had my right ovary, uterus and cervix removed. I was told they were pre-cancerous and I was already going through menopause. My mother used it after two miscarriages. She took this medication throughout her pregnancy, and she carried me to full term, so I suppose it worked. I have had a rare cancer (not gynecological), though, called NETs (neuroendocrine tumors). I've had three surgeries for this. In addition to the NETs, I also have hyperparathyroidism, a paralyzed vocal cord, and a neurological disorder. Doctors always tell me that I have an interesting medical history and find me "unique." I also had ovarian cysts (never needed surgery, though) and painful periods.

DES Daughter: My mother had two miscarriages and when she started to lose me, she was hospitalized. She was injected with DES each day for a week. At the age of forty she gave birth to me.

DES Daughter: I have osteoporosis, and my two daughters and I are all hypermobile, one has Ehlers Danlos Syndrome. And my kids have all kinds of weird things - thoracic outlet syndrome, a Rathke’s pouch cyst, vision issues and joint problems everywhere. And they’re only in their 30’s.