#RareDiseaseDay falls on my birthday each year: 28th February. It’s really important to me to continue raising awareness of leukodystrophies and other rare diseases, so I took part in a social media campaign for Alex TLC to briefly share how it’s challenging to live with a long-term ailment. Like I wrote there — it is NOT a life sentence. 🧠🧬

I recently shared my experience of being diagnosed with AMN in my early twenties with Alex TLC - the charity that represents me and many other people up and down the United Kingdom who have leukodystrophies. It was important to me to be transparent about how it started to present itself, what’s transpired along the way and some of the things I’ve learned from the whole shebang in the hope that it might be of use to someone in a similar position, as well as to raise some awareness around it too.