Donate Become a member
A gradient of colour between pink and a turquoise green. To the right a myasthenia awareness month logo ribbon comes in from the top

Stuart’s story – MyAware

Stuart has ocular myasthenia gravis. He shares how the diagnosis has affected his life. Learn more about myasthenia and how you can get involved in Myasthenia Awareness Month in June 2024, by visiting Genetic Alliance UK member, MyAware’s website. 

Having been diagnosed with ocular myasthenia gravis in February 2021, it was to say the least, a shock to the system. I had never heard of this in any shape or form, and it came from absolutely nowhere. 

 Dealing with the diagnosis

So, life then changed for me and I decided to attack this by really trying to get myself back up and running. Initially this was a real low blow and I’m not scared to admit it played havoc with my emotions. Mentally it was tough, and still is from time to time, but I’m getting to grips with it as the weeks and months go on, the greatest thing that gave me a massive boost was getting to drive my car again I can’t tell you how wonderful that moment was when there had been no double vision, and no relapse for 3-4 months I was finally back in my car, although walking was also good it was just an overwhelming feeling to get back behind the wheel.    

The past 18 months have been tough and I still have moments of anxiety and frustration. Mainly because just when you think you’re having a good day you can sometimes hit a brick wall. A lot of that is because I haven’t been listening to my body and taking a step back and having a rest when I need it. With myasthenia, if you keep going it will sometimes catch you out, so listening to your body is key. 

A man sat on a plane holding up a purple leaflet. He wears a sunflower lanyard around his neck. He wears glasses and looks at the camera

  • Some statistics about my life with ocular myasthenia gravis

  • 6

    appointments

    The number of hospital appointments I attend in a year

  • 1

    month

    The time it took to get a diagnosis

  • 4

    medications

    taken each day

Where I’m at now

Currently my medication is on the way down and is making great progress. I was initially on 40 mg of steroids a day and now I am on just 2mg a day with a 1mg reduction at the start of every calendar month which would mean that by the end of this year I should be off steroids – providing things stay the same and there are no issues with my eyes and no double vision.

This has been a slow journey and my advice to anyone going through similar is that patience is key. I attend appointments every 3 months with my consultant. There has been some frustration on my side as when I was feeling like I was doing ok, I wanted to do things a bit quicker. But we laugh it off and I manage to follow the advice thoroughly. 

I shall continue to look for opportunities locally to promote awareness about myasthenia in the hope that the word can spread.