The story of Laurna
I was diagnosed with myasthenia gravis a year and a half ago – at the tender age of 26. The first six months were incredible difficult as I not only had to learn all about an illness I’d never heard of but I also had to continually answer questions about it. This, on top of it taking months to get an appointment with a specialist who could provide the necessary medication, made me incredibly low. I couldn’t see how I was going to be able to live a full life.
However, after finally getting the consultant appointment and getting out on medication, I pulled myself together and was able to live more fully last year than I had in years. I walked 120km of the Camino de Santiago, ran a half marathon in under two hours and nearly cycled from London to Brighton overnight all to raise funds for Myaware.
I also worked harder than ever before and by the end of 2014 I had secured a dream job – leading a digital team in a government department.
This year I’ve started a blog to chronicle what it is like to live with myasthenia gravis – it’s called 365 Days of Myasthenia as I am planning to write a post every day for a year. You can view it here 365 days living with Myasthenia Gravis | Documenting the life of a 20-something woman with MG for a year
https://365daysofmyasthenia.wordpress.com/
On there, I write about the different ways MG affects my life and I hope I convey that it is entirely possible to live a fulfilling life with this rare condition.
Connect with others who understand on the international MG community:Â https://www.rareconnect.org/en/community/myasthenia-gravis