Myaware is the 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. Members of myaware can access our free benefits and counselling services.

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 online. 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.

 

Developing validated specific home based assessment tools for monitoring fluctuations in fatigability and muscle performance in adult and paediatric myasthenia patients (Victoria Selby, London)

The aim of this research is to develop and validate specific home based assessment tools for monitoring fluctuations in fatigability and muscle performance in adult and paediatric myasthenia patients. The first step is to identify and understand the physical challenges that patients living with myasthenia have to overcome.

 

We hope to recruit patients (10 adults and 5-10 children, aged between 5 and 18 years) to undertake a structured interview process. Analysis of the responses will identify recurrent themes which the original participants will be asked to reassess and comment upon.  Based on these findings, assessment methods/tools will be selected that correlate to the themes identified. It is hoped that in the future, patients will complete these assessments when attending hospital clinic appointments and a selection of the assessments will then be carried forward and translated into a home assessment tool which will proved a useful and reproduce aid for the patient and physician. 

© 2015   Myasthenia Gravis Association

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