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What began as a personal journey became my family's journey. Sodium valproate became the red flag that prompted a wider exploration of medicine safety. Through evidence, education and lived experience, Darkside of Medicine encourages people to ask questions, understand risk and make informed decisions.

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understanding medicine safety

Medicine Safety

medicines for epilepsy

Sodium Valproate

teratogen pregnancy prevention plan

Teratogens

girls with fetal valproate spectrum disorder

Fetal Valproate
Spectrum Disorder

Resources

There was a time when I was a child, and later a teenager, when my father and I would spend hours discussing philosophical questions.  He did this too with my brother – talks into the early hours, fascinating concepts, his continual questions to me, why?  It stretched my mind, teaching me to question the nature of the world about me.

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We would talk about life, people, beliefs, and ideas. Sometimes the questions were impossible to answer. Sometimes they led us down winding paths of discussion that seemed to raise more questions than they answered. Yet I loved those conversations. They were deep and stimulating. I loved this.

My father taught me that asking questions was not a sign of disrespect or rebellion. It was a way of understanding the world.  The spiralling questions would carry me deeper into topics that struck my interest.

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He encouraged curiosity. He taught me that knowledge is not fixed and that our understanding of the world changes as we learn more. Most importantly, he taught me that it is perfectly acceptable to ask "Why?" and "How do we know?"

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At the time, I had no idea how important those lessons would become.

As a young girl diagnosed with epilepsy, I grew up in a very different world from the one we know today. Doctors were respected figures whose advice was rarely questioned. Patients generally accepted what they were told, trusting that decisions had been made carefully and in their best interests.  These were people who spent years training to ensure they could give us well-informed guidance, and we trusted them with our well-being.

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I was no different.

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I believed that the medicines I was prescribed had been thoroughly researched and tested. I believed that the benefits and risks had been carefully weighed. I trusted in my doctors and in my parents who, from twelve, made my choices for me.   I never questioned, I lived in miles from anywhere, I spent my teenage years relying on others, to escape my beloved home, for education for play.  My health was another part of how I obliviously I lived my life.

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For many years, I stopped asking questions.

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Not because I had lost my curiosity, but because I trusted the people around me to ask the questions on my behalf.

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Life moved forward. I learned to live with epilepsy. I built a life, planned for the future, and assumed that the systems designed to protect patients were working as they should.

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Then life began to ask questions of me.

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Some of those questions arrived through loss. Some arrived through grief. Others emerged slowly over many years as I watched events unfold that I struggled to understand.

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Like many people who have experienced unexpected tragedy, I found myself asking questions that had no easy answers.

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Why had this happened?

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Was it simply a chance?

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Often, my life took over as I was caring for two disabled children whilst managing my health, I was a single parent, with family on the other side of the county, and there were times when my life took over.

Then  I was contacted  by Emma Fridman of FACSaware, in one phone call, my questions came flooding back to me.  She, like me, had taken part in the FACS litigation.  The questions I had had resurfaced.

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Could anything have been done differently?

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What was known at the time?

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And perhaps the hardest question of all:

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What if the answers had been there all along?

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I did not set out to become involved in medicine safety, research, advocacy, or policy. I was simply trying to understand my own life and my family's experiences. Yet every answer seemed to lead to another question, and every question seemed to open another door.  The first door was a meeting with Norman Laamb, arranged by Emma Friedmann, and thus, I opened the door on a new chapter of my life.

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The bigger picture: teratogens emerged, substances that cause birth defects, as a question; it became a frightening one.  In these pages and the following blogs, I explore the answers for me.

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What began as a search for answers gradually became a search for understanding.

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Along the way, I discovered something unexpected. Science is not simply a collection of facts. It is a process. It evolves as new evidence emerges. It challenges assumptions, revisits old ideas, and continually asks whether what we believe today will still be true tomorrow.

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As a child, discussing philosophy with my father, I learned that knowledge is rarely fixed. Decades later, I found myself rediscovering the same lesson through medicine and science.

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The more I learned, the more I realised how much there was still to learn.

Some questions had answers.

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Others had partial answers.

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Some appeared to have been asked many years ago but never fully explored and have been forgotten over time.

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And some questions seemed not to have been asked at all.

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I once thought science was about certainty. Now I think science is about curiosity.

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The most important lesson I have learned is that good science is not afraid of questions. In fact, questions are the foundation upon which science is built.

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Every discovery begins with somebody asking, "Why?"

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Every improvement begins with somebody asking, "Could this be done better?"

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Every advance in patient safety begins with somebody noticing that something does not quite fit the explanation they have been given.

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Looking back, I realise that my father never really taught me philosophy.

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What he taught me was curiosity.

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He taught me that asking questions is not a challenge to knowledge; it is how knowledge grows.

Many years later, after loss, grief, research, and a lifetime of experiences I could never have imagined as a child, I find myself returning to those same lessons.

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I am still asking questions.

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Perhaps I always will.

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Teratogenicity remains an evolving science. The questions are complex, and many answers are still emerging.

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As I watch my children grow older, I often wonder what the world they inherit will look like. What will we understand in ten years that we do not fully understand today? What risks will we identify? What protections will we create?  It is through science that our future will unfold; it is the scientists who step outside the norm who will carry us forward.

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Perhaps that is why I continue to ask questions.

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Not because I expect all the answers, but because every answer begins with a question.  The questions of medicine safety, sodium valproate, fetal valproate spectrum disorder and teratogens are intertwined. Here, I look at Teratogens.

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