Uncovering Diethylstilbestrol (DES) Exposure with Karen Fernandes

Karen Fernandes has been a nurse for over forty years and is Principal and President of AYR Consulting Group, where she supports hospitals across the United States in their quest for quality, patient safety, and compliance with Joint Commission Standards and Medicare Regulations. In her nursing experience, Karen has held many positions from Medical/Surgical, Emergency, OB, Nursing Supervisor, Chief Nursing Officer, and Director of Quality Management. 

As a volunteer, Karen has been an advocate for the Diethylstilbestrol (DES) exposed for over 30 years. Karen served as President and board member of DES Action/USA, a non-profit organization whose goal is education, advocacy, and support of the millions of Americans exposed to DES. To expand the knowledge base, Karen has participated in National Institute of Health (NIH) research studies on DES and authored a DES Exposure Nursing Curriculum available in the United States, Canada, and Europe. Currently, Karen is the lead administrator for DES Info, a group that shares ongoing information for those affected. Karen is also a member of the Centers for Medicare and Medicaid Services (CMS) Person and Family Engagement Network (PFEN).

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Here’s a glimpse of what you’ll learn:

Here’s a glimpse of what you’ll learn:

·        The historical context and risks of Diethylstilbestrol (DES) exposure

·        Karen Fernandes’s lived experience with DES exposure

·        How to be proactive if you are DES exposed or have a family history linked to DES

·        Advice to providers for addressing DES exposure in partnership with patients

·        Karen Fernandes’s advocacy work for those affected by DES

In this episode…

The story of Diethylstilbestrol (DES) began in 1938 when British physician and chemist Charles Dodds and his team of scientists made the first synthetic oral form of estrogen. While DES was used widely to prevent miscarriage and related complications in pregnant women, 1970s research has since linked DES exposure to a host of health conditions that affect generations.

Still, many are uninformed about DES, including health providers. Karen, who shares her insights as a DES daughter, nurse, and advocate, advises the DES-exposed or those concerned about DES exposure to ask providers questions and actively seek information related to DES. At the same time, providers must engage in an ongoing dialogue with patients to become familiarized with their lived experiences and address DES exposure.

In this episode of the Patient Partner Innovation Community podcast, Desiree Bradley is joined by Karen Fernandes, president of AYR Consulting Group in Dallas, Texas, to discuss the prevalence and risks of DES exposure.

Resources Mentioned in this Episode:

DES Info

NIH website

AYR Consulting Group

National Quality Forum

The Joint Commission

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