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Appeal 2022: ‘Speak out, spread the word’ - read Lisa's story 

My name is Lisa and I want to speak out and spread the word about myasthenia and my journey. 

  My life before myasthenia was a very happy one. I enjoyed socialising and   having fun.

  I was always the last to leave a party and went on lots of holidays. When I       became a mother, I was absolutely loving my life.   I had a career in the city,     worked part time and I thought I had it all and completely the right balance.

My main symptoms started with my eyesight changing, I kept getting double vision and couldn’t focus properly, then weakness began in my whole body, mostly my legs and extreme fatigue. Then in 2009 my world completely changed when I   collapsed in a supermarket car park whilst I was with my 5-year-old daughter, she was petrified. This I now know  was my first myasthenic crisis.

My life and I was never the same after this.

It took until 2017 for me to be diagnosed with myasthenia, and in the years before diagnosis I was repeatedly collapsing, I couldn’t get of bed, I had breathing difficulties and had to call ambulances on many occasions. I became known locally as the collapsing woman, it would happen in supermarkets, shops, train stations. Strangers would have to carry me to my car as I knew that once I had rested for 30 minutes I could attempt to move again. I couldn’t take my children to the park on my own through fear of collapsing and I was in bed most nights by 6pm. By now my speech was also affected and so was eating and swallowing food, I almost choked so many times I had to learn what foods to avoid.

I lost friendships as I didn’t know what was wrong with me and I couldn’t explain that I was too weak to go to social occasions, I stopped going out and didn’t turn up to parties – a lot of people just didn’t understand what I was going through.

It was a chance conversation with a doctor (who was not a neurologist) who attended my local church who asked me if I had heard of myasthenia (which I hadn’t!) and suggested that I should go and see a Neurologist. During these years I had already paid to see four Neurologists and had been prescribed anti-psychotic medicines and referred to a neuropsychiatrist which added to my struggles when I wasn’t demonstrating or complaining ever of any depression or mental health problems.

I had lost years of my life, my career, my kids lost their mum, and I was insulted so many times and told it was ‘in my head’.

I knew that there was something physically wrong with me and I had to fight this battle. Finally, I was diagnosed, and it was a relief to know what was wrong with me, but during the first year I was diagnosed I was in hospital for two months, it was a fight for the Neurologist to get me back to a stable enough condition to go home. And after getting home it was then a very tough journey of taking steroids, being in a wheelchair, being housebound and dealing with the side effects of my medication. Since being diagnosed I have had IVIG treatment 15 times, which gives me a lease of life, but I am still on a tough journey. The support I have received from myaware has meant so much to me and I have met two very good friends who have helped me so much.

I am blessed to be alive and being part of the myasthenia community has prevented me from being lost and alone in a world where no one understands the complexity of myasthenia.

Myaware receive no government or NHS funding and rely on donations and gifts to support their work.

Can you donate £10 to help our community speak out and spread the word?

I understand that in the current economic climate, you may not be able to donate. If this is the case, could you share this appeal with your family and friends via social media, text, phone or email?

Thank you for supporting our amazing community.

Lisa, myaware member

Watch Lisa's story here

If you would like to share your story with myaware to feature in a future newsletter, appeal or on the website, email [email protected]