I’m Sarah, and I live in Eastbourne. Myasthenia has altered life in many ways!

When my partner Huw was diagnosed, we went to our Sussex support group to meet others and help us come to terms with this and its implications. We soon appreciated that life needed tweaking, and instead of cramming in as much as we could, we’d have to slow things down and manage our time better. I wanted to get more involved with helping out, and voluntary work with myaware soon grew and led me to now working as a support worker – very different from being a nursery teacher in a busy school! As Huw retired last year, we’re now both at home a lot more, so life’s changed significantly.

We’re well supported by family, especially our parents, and some very good friends, who’ve been brilliant with fundraising, getting involved in events and donating generously and repeatedly. We’re also very lucky to be well-looked after by Seána and the wider team at King's.

My tip for living with myasthenia? Try to relax and enjoy the things you like doing best – as regularly as you can and are able. And that’s not just those with myasthenia, but those around them too.