WORCESTERSHIRE residents with a rare muscle weakening disorder are being invited to a support group meeting in Worcester this week.

The charity Myaware is holding a meeting of its Worcestershire group at The Hive on Wednesday February 10 from 1pm to 3pm in Room 3 to help local people living with myasthenia.

Myaware Midlands regional organiser Sarah Hindley said: “This is a great opportunity to meet others living with the condition and to find out more about day-to-day management of the illness. The meeting is free to attend and will also include a free lunch and teas/coffees.

“Anyone living with myasthenia in Worcestershire and the surrounding areas is welcome along with their friends, partners or family. Come along to find out more and to make new friends.”

Myasthenia comes from the Greek for “muscle” and “weakness” and is a manageable condition with proper care and medication, enabling people to get on with their lives.

There are different form of the illness and most people have myasthenia gravis (MG), ocular MG or Lambert-Eaton myasthenia syndrome (LEMS). In a few cases it is cause by gene faults resulting in congenital myasthenia (CMS). MG and LEMS are autoimmune conditions which occur when anitbodies that normally fight infections don’t work properly and attack the nervous system.

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 and this can lead to medical emergency.

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

Myaware has a number of tips for dealing with the symptoms and they include:

Eat well, rest well

A well-balanced diet and plenty of rest really can help to keep your condition under control. Notice which foods work for you. You may also find a food diary useful as you will notice patterns. One patient kept a diary and realised that her weekly takeaway was making her ill. The monosodium glutamate was a trigger for her myasthenia.

Rest

When it comes to myasthenia, the more you rest the more you can do. You may find relaxation techniques such as mindfulness or meditation useful as well as gentle exercise such as Tai Chi. Many people learn to pace themselves and decide on which are the important things for them to do, and which are not. Making time for rest is important and can make a big difference to living with myasthenia.

Cook in batches

If you enjoy cooking, cook extra on the days when you feel up to it and freeze it so you will always have something nutritious to eat on a bad day.

Keep an eye on the weather

Don’t get too hot or too cold. Where possible avoid being out in extreme weather conditions. Changes in temperature can have a noticeable effect on muscle function.

Communicate clearly

Myasthenia is very hard to diagnose. You can help your treatment along if you are able to communicate clearly with medical staff and avoid vague terms. Remember that everyone is different and your doctors can help you best if they understand how you are feeling.

Keep a diary

Write down any questions or new symptoms that come up between appointments with your consultant or GP. You won’t then forget to ask anything. A daily record of how your myasthenia affects you is also useful when applying for any benefits, or talking to your employer.

• Myaware aims to provide a care and support network for myasthenia patients and their families and to promote research aimed at understanding what causes these disorders and at developing better treatments. For more information visit is www.myaware.org or ring 01905 938564