Myaware is the working name for the Myasthenia Gravis Association. MGA has been around since May 1976. We support people with myasthenia and their families, increase public and medical awareness of the condition and raise funds for research and support staff.

If you’ve just been diagnosed with myasthenia, you’ve come to the right place. Our aim is to make your life easier. We provide information, advice and support. Call us now or join myaware, our online community. You will have free access to our resource centre which includes advice on everything from the latest medical developments and treatments to how to negotiate the benefits system. You can also get in touch with other members who understand what you are going through.

First and foremost, do not panic. Myasthenia is rare but it is also manageable. With proper care and medication it can usually be tamed so that you can get on with your life.

Myasthenia means muscle weakness. It affects the muscles that let you move but not the automatic ones like your heart that you don’t have to think about. Your brain tells your muscles to work, but the message doesn’t get through.

In a few cases this may be caused by gene faults you were born with (Congenital myasthenia or CMS). More people develop during their life (Myasthenia Gravis or MG; Ocular MG or Lambert Eaton Myasthenic Syndrome or LEMS).

MG and LEMS are autoimmune conditions and antibodies which normally fight infections go wrong and attack the communication system between the brain and your movement muscles.

The symptoms of myasthenia include muscle weakness which makes day to day activities like walking, smiling and talking very difficult. When swallowing and breathing are effected and this can lead to medical emergency.

We think there are around 10-12,000 people with myasthenias in the UK and Ireland but at the moment there are no accurate published figures.

 

 

It is June 2009. First year Uni exams are over and after a night celebrating my friends and I are back home indulging in the obligatory post party takeaway. In the background our TV is showing the NBA finals. Orlando Magic are playing The Lakers who go onto win the championship series 4-1. 

It isn't the game that I remember, but a clip of retired basketball legend Michael Jordan talking about what drove him to success in the NBA. 'If you run into a wall” he said, “don't turn around and give up. Figure out how to climb it, go through it or work around it.' 

Now he may be a 6"6 elite athlete, and I but 5’2” (rounding up) with Congenital Myasthenia. But the message seemed just as applicable, maybe more so. I'm was not aiming to shoot a three pointer or make the roster,  I was simply trying to get through a day of school, get the right medication, walk without braces, feel part of a group as I went the teenage years. 

To see where you have come from, you have to go back….let me take you back to 1990 the year I was born, and things are looking rather bleak. 

I was born in Boston, Massachusetts, emerging a lovely shade of blue and clearly unwell. I surprised everyone. Nothing untoward had happened during my mum’s pregnancy to suggest anything was awry.  Yet clearly there was. And I remained a mystery until I was five when, back in the UK, a wonderful doctor recognised the CMS symptoms and life changed for the better>

Those first five years were touch and go. I spent the majority of them in and out of hospital. Pneumonia would set in even with the slightest of colds. Without any medication I ran out of the energy to cough and went 'downhill' very fast. Every illness resulted in long periods of hospitalisation and intubation. 

Feeding me, was a marathon as weak muscles meant sucking a bottle was a huge effort.  One feed could take two hours. Oh how times have changed.

No doubt result of my weakness, I also entered the world with incredibly stiff joints – a pretty acute form of arthrogryposis.  To straighten them, I underwent major orthopaedic surgery when but two years old, and spent eight weeks in a body cast. 

The operation proved a success but I continued to wear leg and wrist splints, callipers to aid walking and endured hours of physical therapy well into my teens to build up strength and suppleness in my skeletal muscles. 

'That day changed my life' is often an overused phrase, but no other better describes what happened in 1995.  During a routine visit to Guy’s Hospital one of the medial team recognized my symptoms and carried out the tensilin test used to help diagnose a patient with CMS. According to my parents I literally stood up on my own for the first time ever. 

My sister was totally gobsmacked, having only seen her baby sister sitting, never crawling, and certainly not walking. Now don't get me wrong, I wasn't shooting free throws at this point. My body hadn't used its legs properly since day one, muscles were still tight and stamina was, and still remains a massive issue. But it was a start - for the first time I had some energy.

The test was positive and gave no doubt as to the cause for my fatigue. It enabled doctors to provide the drugs to help combat the illness and everything changed for the better. It was a little miracle>

Up until Year 2 I went to a school which specialised in looking after children with a wide spectrum of physical/mental disabilities. It was a haven of acceptance. My parents didn't have to worry about the possible pitfalls of a 'regular' school at such a precarious time. However, I began to need more of an academic challenge, so after a year moved to a local mainstream primary, one where the head really understood all my physical limitations and laid on classroom assistance, help with school bags and aid with moving around the premises. 

I must point out how lucky I am to have parents who did the research, spoke at length to the head teachers, and made sure every decision was carefully considered with my CMS in mind.>

Since that day I have remained in 'regular' education, moving many times though only for family relocations. As time progressed, I needed less assistance growing strong enough to dispense with callipers. The one constant limitation was PE. Any exercise was on my own, usually in the form of physio therapy. A side benefit of this was that I had extra time for homework, meaning I didn't have to stay up late and could get the necessary rest.

By 2000 I had been taking my Pyridostygmine medication for five years and it was then that, whilst once more living in the USA, I was referred to the Mayo clinic in Minnesota. I spent a week there having innumerable tests, bloods, meetings and a muscle biopsy. It culminated with meeting Dr Engel, an expert in CMS, who prescribed supplementary medication. It has proved hugely beneficial in increasing my energy levels and in turn physical capabilities no end.

I am often asked whether or not I was picked on at school, particularly in the early years when kids are at their most frank. How I handled going to school in callipers, being looked at when pushed in a wheelchair? How do you explain medical requirements when there is often no visible sign or when symptoms can change fairly rapidly, particularly when under stress, ill or tired.

Over the years I have found useful ways to cope - truthfully by trial and error. 

I'm never sure if my personality has helped me deal with it all, or perhaps it is the other way around - my illness has shaped me. Being quite chatty, assertive and I hope empathetic has helped inordinately.

I have to be able to say when I'm not well, and articulate to colleagues and friends exactly what my illness entails - I can't walk a long ways without a short break, must take medication five times a day and sometimes will just be slightly more tired than the average person. 

I was lucky never to have been bullied at school. No wilting wall flower, I was always 'coolish' having a close group of friends whilst rubbing along with everyone else. Day to day, the vast majority of people I've met have been generous, understanding and more than accepting - the big man upstairs has 'done good'.  And for the minority? I pity their lack of kindness as we are all, as Plato says, fighting a battle' somewhere>

When out and about I give myself extra time to get somewhere, as I can’t just run after a bus or train. I make sure I get a seat whoever possible and if really tired take a taxi - an extravagance to some, but for me just a small hurdle to ensure I can still meet up with friends on a night in London. 

When meeting new people I tend not to tell them I have an illness, I don't mention it in interviews as it bears no relevance to the role. If anyone asks, I gladly explain. 

If you or someone you know has been recently diagnosed,  and are worried  what the future holds I hope this note helps in some small way to highlight all the positives that there are. 

A doctor once told my mum I would be no more than a vegetable - well to her I say this. I've made it through school, university, and have worked full time since the day I graduated. I love my job; collected a fabulous group of friends, have driven since I was 17, and have grade 8 Piano. 

It’s now 2014 and Michael Jordan's metaphorical "wall" is still there but I'm working round it. The aim is to reach my own NBA final of sorts - move up the career ladder, perhaps have kids and get married, travel more….you know the scoop. Right now I'm moving up the minor leagues, and the notes in the coaches’ folder would definitely say ‘Great progress and much more to come.' 

© 2014   Myasthenia Gravis Association

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