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Lived Experience in Research: The Unique Role of the Ervaringsdeskundige

Recently, I stumbled across an old name badge while tidying up. It was from my first-ever speaking engagement, 10 years ago. Back then, I was a parent fresh off the rollercoaster of a rare TAPS diagnosis. My twins were born prematurely, and the months that followed were filled with uncertainty and fear. At the time, I didn’t see myself as any kind of “expert.” I was a parent trying to make sense of an overwhelming situation that I had been dropped into around 12 months previously.

more than just a snuggle kangaroo care for twins stephanie ernst writer

More Than Just A Snuggle: Kangaroo Care For Twins

Noone expects to have a premature baby. (or in my case, babies). But that’s the situation I found myself in 10 years ago. 2 very ill, pre-term babies in a NICU – and not knowing what the next hour held, let alone the future. This blog is going to be a little emotional to write, because it’s sharing my experience with kangaroo care, and what it meant to me. After all, today is Kangaroo Care Awareness Day,  and I passionately advocate for kangaroo care for multiple births, as my own experience shows that kangaroo care for twins is possible.

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stephanie ernst leave the white coat

Leave The White Coat At The Door

There is a lot of symbolism and respect within the white coat for medical professionals. It’s a symbol of knowledge, of a lot of learning, and carries a lot of esteem and recognition. After all, medical professionals earn the right to wear the white coat, with years of study and field experience to establish their role as an expert.

It is not an easy role nor an easy pathway to reach the role of medical professional, and this should be respected. But along with the respect that the white coat should deserve comes sometimes an unwanted side effect – white coat syndrome.

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Don’t Compare Twins, But Keep The Differences In Mind Stephanie Ernst writer

Don’t Compare Twins, But Keep The Differences In Mind.

I saw an article online that’s gone somewhat viral – a TikTok from a  twin mum urging parents to stop worrying about delayed development in their babies- you can’t even compare twins.   As a parent of twins, I absolutely 100% agree with this sentiment – it’s something we all catch ourselves doing, and it can be stressful.

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lived vs learned experience stephanie ernst writer

Lived vs Learned Experience – The Role of Patients in Research         

I recent wrote an article for Rare Revolution magazine – “Engaging Patients To Shape The Research Of The Future”, explicitly talking about how  the shape of research is changing, with more and more focus now turning to consultation of patient organisations in developing clinical research. 

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