This blog is part writing therapy, part rant, part activism, part distress, part processing, part making peace. It flicks seamlessly between all of the above, so you never know quite what ‘part’ you’re in when you read it, heck sometimes…
Today is Rare Disease Day 2019, celebrating people living with, and raising awareness of rare diseases. There are between 6000 and 8000 rare diseases, with new ones being discovered on a regular basis and equally more and more already known…
What a year 2018 has been. Such highs, such lows, but overall, it’s been an incredible year. I have had such fun, achieved a lot, received recognition for my work, been involved with even more work and projects, I’ve given…
And so it is, the final day of the Autumn 2018 cohort of the NHS Peer Leadership Academy. This continues with my series in which you can read previous blogs sharing my PLA journey by clicking the hyperlinked text for…
Well back to blogging but on my new website. I thought I’d do a post about a few awareness days/weeks/months that are current this month or fall this week. Sepsis Awareness Month First off, September is Sepsis Awareness Month. I’ve…
This week I was admitted to the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, Queen Square (NHNN). This admission was for my muscle biopsy, long awaited - I’ve been waiting since 2016, and we…
Charlie Gard. A little boy whose care has polarised the world. A little boy with a severe condition called infantile encephalomyopathic Mitochondrial DNA Depletion Syndrome. He sadly passed away last week. His doctors for months had wanted to remove his…
