Can you help people with myasthenia get the support they need?

I know that many of you reading this letter will have had similar experiences to me and I also know how important it is to feel understood when living with this debilitating, rare condition.

This is why I’ve chosen to share my story with you, in the hope that you can help others like us get the support they need.

Before being diagnosed with myasthenia, my life was pretty good. I enjoyed working, spending time with my family and friends and playing bridge – all the things we often take for granted. But life changed drastically in January 2015.

I developed classic ocular symptoms – double vision and ptosis (drooping eyelids). The ptosis became so bad that my eyelid kept closing and I was unable to keep it open. I started to feel very tired, but because I was working so hard, I didn’t think much of it. Then came problems with chewing. I couldn’t even keep my head up – the muscles seemed too weak to work.

As time progressed, things got even worse. I became unable to drive and I felt ‘off-balance’. Finally, I found it difficult to work.

I went back time and time again to my optician thinking it was purely a vison problem and none of the opticians I saw suggested it might be anything else. After six months, I finally spoke to a friend who is an orthoptist and she immediately suggested seeing my GP or going to the Eye Hospital. It was then that I was diagnosed with generalised myasthenia gravis.

My friends and family were all fantastic, supportive and helpful. They were behind me all the way, but were not sure exactly what myasthenia was and how it was going to be treated. It was a worrying time for us all, so my neurologist suggested I get in touch with myaware to meet people who could understand what I was going through.

I am so glad I did. For me, the most important part about myaware is the support and understanding you get from people who have been there and who know exactly what you mean when you talk about your symptoms. They don’t judge you when you describe how you are feeling. 

I feel accepted and enjoy the camaraderie of my local support group (Sussex, run by Sarah Bailey). I also value myaware’s other support services, especially liaising with my local Support Worker. Thanks to myaware, I can accept my condition and manage it from day-to-day.

Could you donate £10 to help myaware keep up their valuable support services? 

Myaware receives no government or NHS funding – all of their work takes place thanks to generous people such as you. They are the only UK charity solely dedicated to providing support to people living with myasthenia and this is why this appeal is so important.

Myaware means we are not alone. Your help in continuing these vital services is much appreciated.

Thank you for reading my story and I hope that one day I am able to hear yours thanks to myaware’s ongoing support.

Sharon, South East member, on behalf of myaware