From TEN Survivor  Stuart Doyle

Please share!

Hello all,

I hope you’re all well, or as well as any of us are at any given time!

A few weeks ago I was asked by UKPGx (UK Pharmacogenetics & Stratified Medicine Network) to take part in their annual conference, the UKPGx Open Meeting. As you can see from the name, UKPGx is far easier to spell! This network may be UK based – but it spans the globe!  This conference is attended by around 250 delegates. They make up the big hitters in the research communities, NHS, universities, doctors, professors, PhD students, big pharma, and even Knights and Dames of the realm. In short, it was a couple of hundred seriously big brains! The thing is though, it was not only an honour to be asked to speak about Stevens-Johnson Syndrome and my Toxic Epidermal Necrolysis Syndrome reaction. But it was staggering being in a lecture theatre, surrounded by so many phenomenal minds and organisations that want to help prevent exactly what I spoke about.

They want to help, the work that’s being done is astounding, and filled me with so much hope and pride – because here’s the thing: The reason they’re able to do this work, the inspiration for their ideas and trials, for their ongoing research – is us! That’s why they gave me the platform. To tell our story! We all know what it feels like to burn, and how hard we have to fight not just to survive – but to then live! And that’s why they asked me to help. They know the medicine, but they wanted the story behind it. I’ll be working closely with them moving forward, as I have off and on for the past few years.

Please feel free to share this wherever you like. If you have a friend or family member who doesn’t ‘get it’ – show them. If you feel misunderstood, don’t anymore. If you’re one of the many who are trying to raise awareness, then hit the share button and go to YouTube and give it a thumbs up – it’ll make the video more visible and it’ll reach more of the people that need to know. This was a talk to professionals, so I have not described what SJS is, they already knew and had just had a lecture on it, but I do talk about what happened, and life afterwards.

Don’t just be one of those people that says they’re part of the solution – be part of it! Share the video and help reach the ‘you’ from your own reaction and recovery! We have such a great SJS community – so let’s prove it! Help this reach the next survivor – the one who we were back then, the one who is still scared, alone and who is looking for answers.

Thumbs up and share both this post and the YouTube link! Let’s take over the world with our blue ribbons.

https://youtu.be/mfC5yHxW83M