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. This means antibodies that 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 affected, this can lead to a medical emergency.

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

Science Lesson
A to Z of the illness
 

In time you will learn how to live with your condition without it taking over your life. As one member said ‘I have myasthenia, it doesn’t have me‘.

Everyone is different. Cases can be mild or debilitating and there may be periods of relapse and remission.

Myaware is a fantastic resource for anybody who has just been diagnosed with the condition and for the family and friends who are indirectly affected. Whether you’re looking for a simple explanation or for all the information you can lay your hands on we’ve got it covered. Start with our simple fact sheets and then visit the medical resource centre to read up on the latest research and find out what you need to know about managing your symptoms and getting the best out of your treatment.

 

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