Myaware is the name of 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.

 

Ground-breaking research offers hope for people with myasthenia

 

Pioneering research into a debilitating muscle weakening disease is offering hope to people with myasthenia.

Myaware is funding a new research project which will involve patients across the UK over the next four years.

Myasthenia gravis (MG) is a relatively rare disorder affecting the connection between nerves and muscles, causing muscle weakness which can affect mobility, speech, vision, the ability to swallow and even breathing.

In half of people diagnosed, the condition starts by just affecting the eyes, causing double vision and drooping eyelids but, over about two years, it often develops to affect other parts of the body.

The new research will look at why the disease develops from initial eye and vision problems into general MG in some patients but not others, so treatment can be tailored accordingly.

Ruth Ingledew, Chief Executive of myaware, said: “Currently, there are no reliable tests or clinical evaluation features to help us determine which patients will develop generalisation of their myasthenia over time and may require more aggressive treatment.

“In this study, we intend to develop and validate robust clinical scores and blood tests in two large groups of MG patients that will enable us to predict which people who initially present with pure eye symptoms will develop generalised MG and which people won’t.

“By identifying those at risk of generalisation, we would hope that, in future, specific MG therapies can be tailored to the individual patient.”

Ruth added: “Myaware is very excited about this project and we are delighted to be able to fund this new research. It is of particular interest to many of our members who either have ocular MG or started with these symptoms before developing generalised MG.”

Dr Paul Maddison, Consultant Neurologist at Queen’s Medical Centre in Nottingham, and Dr Sui Wong, Consultant Neuro-opthalmologist at Moorfields Eye Hospital in London, are heading up the national research project.

Dr Wong talked about the latest project at the ocular myasthenia Information Day in June 2015.


 

 

 

 

 

 

 

 

 

 

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