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Stephanie Ernst on Muck Rack

Stephanie Ernst

(She/Her)
Almere Stad
As seen in: KevinMD.com, Love What Matters, Patient Worthy
Covers:  monochorionic twins, twin anemia polycythemia sequence, twin research, community building, rare diseases research, parenting
#Writer, speaker, & advocate for change in how monochorionic twin pregnancies are diagnosed & treated. Founder of @TAPSSupport. #tapsnerd #twinmom

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Stephanie Ernst’s Biography

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Everything has a story or a history to share, and every person has a tale to tell.

I should know this because I’ve been telling my story for a long time. It’s because I am a raconteuse.

Your story is unique and should be the star of the show. Sometimes, bringing that story to the world stage can be difficult. I am Stephanie Ernst, and I put your story into the spotlight.

Through storytelling and word-crafting your script, I deliver the lines for you, giving your story the chance to shine, so th…

Stephanie Ernst’s Journalist Portfolio

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Seeing Red - Rare Revolution

Seeing Red - Rare Revolution

The importance of twin anemia polycythemia sequence screening for parents. This disease can cause complicatio…

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Rare Revolution

Rare Revolution

Rare Revolution - 22/07/2021 As parents of children with a rare disease, we often juggle the demands of ordi…

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The Problem With a TAPS Diagnosis - Patient Worthy

The Problem With a TAPS Diagnosis - Patient Worthy

First of all, a little about me. I'm an Australian, living in the Netherlands with my German husband and our …

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Do Google It: The Benefits Of Patient-Led Advocacy - Patient Worthy

Do Google It: The Benefits Of Patient-Led Advocacy - Patient Worthy

Running a foundation for a rare disease isn't always an easy thing. I receive emails daily asking me for info…

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Creating Compassionate, Respected Online Rare Disease Communities: 7 Tips For Success - Patient W...

Creating Compassionate, Respected Online Rare Disease Communities: 7 Tips For Success - Patient W...

In a previous article, I talked about the importance of patient-led advocacy groups and how they can positive…

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How Social Media Has Changed Rare Disease Advocacy - Patient Worthy

How Social Media Has Changed Rare Disease Advocacy - Patient Worthy

In this digital age, rare disease issues have become more prevalent and more visible. According to Eurordis, …

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Articles

What MCDA twin parents teach us about shared decision-making

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By Stephanie Ernst
| businessandamerica.com
Monochorionic diamniotic (MCDA) twin pregnancies come with more scans, more risk, and more decisions to make in very little time. Parents are expected to absorb complex medical information, navigate unfamiliar terminology, and act quickly, often under pressure. When care teams do not meet that need for clarity and support, parents do what any reasonable person would do. They go looking for answers.
Open in Who Shared Issue with article?

Why your emotions are your greatest compass in therapy and life Original

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By Maire Daugharty, Jay Wong, Lynn Marie Morski, Stephanie Ernst
| KevinMD.com
In his book Ways of Attending, McGilchrist (2016) discusses a difference in attention—one that seeks organization and one that any attempt at organizing subverts. A bit like Schrödinger’s cat, just by looking, it is disturbed. In differing translations of Tranströmer’s poem Prelude from 17 Dikter (1954), about the moment upon wakening from a dream, he captures the infinite possibility that slides one fully awake into a new day, and which fades rapidly back into the now-forgotten dream.
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Patients are not waiting: What MCDA twin parents teach us about shared decision-making

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By Stephanie Ernst, Pat Rich, Dawn Baker, Natalie Enyedi
| KevinMD.com
Monochorionic diamniotic (MCDA) twin pregnancies come with more scans, more risk, and more decisions to make in very little time. Parents are expected to absorb complex medical information, navigate unfamiliar terminology, and act quickly, often under pressure. When care teams do not meet that need for clarity and support, parents do what any reasonable person would do. They go looking for answers.
Open in Who Shared Issue with article?
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Interview

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What was your first job as a journalist?

Writing for a small website.

Have you ever used a typewriter?

Yes.

How is social media changing news?

It's making news more accessible to people, and opening borders and communities.