Amanda’s story

Fifty-year-old Amanda Hayes, lives in Northumberland Heath, Kent, with her husband Andrew, and cat, Bubba. Twenty four years ago, Amanda was diagnosed with myasthenia gravis. Amanda talks about living with the condition, and the support she has had from Muscular Dystrophy UK

I first heard about Muscular Dystrophy UK about three years ago, when I was having problems accessing the disability benefits I was entitled to. My consultant neurologist put me in touch with the charity’s support team, to help me fill out my application for an Employment and Support Allowance (ESA) and they helped to turn my situation around – their support really was invaluable.

I was diagnosed in 1992. I was married, we’d just been on holiday to Mexico, and I was training to be an accountant. I had needed a number of vaccinations ahead of my trip to Mexico. We had a great holiday, but when I came back I felt really poorly. By January 1992, I was in hospital and became very unwell.I struggled to chew, speak, and swallow. My arms and legs weren’t functioning properly, I felt like everything stopped working. My consultant tested me for myasthenia gravis, and I was diagnosed with the condition shortly afterwards. At the time, doctors thought I would pass away within the year.

The months that followed after my diagnosis were incredibly tough. My husband left me, I had surgery to remove a thymus gland, to halt the development of my condition, and when I was just 27 years-old, I had to stop working. Thankfully, I have always had a positive outlook on life. My mum was the same, and always told me, whatever life throws at you, you have to deal with it, and try and take it on the chin. This helped me so much.

I became involved with a charity supporting people with my condition, and I set up a group for young people with myasthenia gravis. When I was diagnosed, I had never heard of the condition, it was frightening. I realised how important it was to meet other people living with the condition and enjoying life.

On a bad day, I can’t really do anything, so I reside to the sofa to read. On a good day, I can do quite a bit more, spending a fair amount of time cooking and doing housework. If I don’t get enough rest, I have problems with swallowing, talking, and my legs don’t work properly, but I’ll try and do something every day.

About four or five years ago, I started getting severe cramps and sweats. After some tests, I was diagnosed with neuromyotonia (also known as Isaac’s syndrome), a rare nerve disorder, which causes uncontrollable muscle activity. I have since found out that this condition affects a number of people with myasthenia gravis.

One of the most important things to me, is to keep my independence. I have lived with this condition for 25 years, and I still believe, with the right kind of support, you can do anything. I remarried in 2000. I’d met my husband, Andrew, two years earlier at the local rugby club. It was a chance meeting – I’d gone along to the club with a couple of friends for something to do, and Andrew was playing for the club at the time. We live with our cat, Bubba. I enjoy photography, travelling, cooking and shopping. There are plenty of new things I want to try – there’s no stopping me!

The charity is here to help. We offer help and advice on disability benefit enquiries via our specialist helpline. To find out more click here: http://www.musculardystrophyuk.org/get-the-right-care-and-support/our-helpline/

Amanda is an Advocacy Ambassador and can be reached via 020 7803 2886 or ambassadors@musculardystrophyuk.org

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