A personal reflection on Rare Disease Day 2025
I was honoured to be asked to write a few words over at Penny Post to commemorate today.📝💥
I’ve reproduced the text from the website below so that if the link ever goes offline it’s still viewable, but if you’d like to read it directly on their website then you can do so here.
Rare Disease Day is 28 February. It’s a time for us to raise awareness of and generate change for the millions of people worldwide living with a rare disease, alongside their loved ones and carers.
It’s an important day of the year for me personally as someone who lives with a rare disease; a condition called Adrenomyeloneuropathy, or AMN, that affects around 40,000 people worldwide. It belongs to a family of conditions called Leukodystrophies that affects the white matter of the central nervous system.
I was diagnosed back in 2018 and it’d be a lie to say that it didn’t upend what I thought I knew about life… it’s not something you expect to happen suddenly to you in your early twenties. Having said that, I did make it through in one piece after a lot of heartache and butted heads along the way, running parallel to a newfound energy and an admiration for what disabled people go through every day.
Disabilities are a spectrum; there are so many of them out there, impacting basically every area of our being imaginable. We’ve made great strides over the years as a species to be more knowledgable and accommodating towards these ailments — aspects like social acceptance, legislation and so forth — but there is always more work to be done. It’s so important to keep pressing forward with this and to speak up when things fall short so that we can collectively learn to be better.
Just like life itself, it’s a continuing voyage of self-discovery. I think most of all, though, I’ve learned the true importance of patience and humility and kindness. They are the most important things we can be to one another regardless of ability, background, status or anything else. We’re all in this together, and we only get one shot at this — so let’s lift each other up and do the best damn job we can whilst our fires burn bright.
Kindness always wins.
To learn more about Alex TLC (The Leukodystrophies Charity) and the incredible work they do to support those affected by leukodystrophies, see their website here.
To read about the journey I’ve been on with AMN, see here.