Myasthenia Gravis Association supports Rare Disease Day 2014

Myasthenia Gravis Association logo

The Myasthenia Gravis Association will be supporting Rare Disease Day 2014 on Friday 28 February as a way of raising awareness of Myasthenia Gravis.

The association’s next support group meeting will take place on Thursday 6 March at Demesne Media Arts Centre, Bowness Road, Middleton, M24 4NU at 7.30pm.

The Myasthenia Gravis Association exists to promote the welfare of suffers from Myasthenia Gravis, Lambert- Eaton Myasthenic Syndrome (LEMS) and CMS Congenital Myasthenic Syndrome throughout the United Kingdom and the Republic of Ireland.

Myasthenia Gravis is a neuro-muscular condition that affects approximately 1 in 10,000 people in the UK. Myasthenia Gravis is a condition characterised by fluctuating muscle weakness, which in rare cases may be fatal, particularly if left untreated.

Regional Organiser Sarah Sanders said: “There are over 600 people with Myasthenia Gravis in the North West Region and so many more that we are not currently aware of.”

Myasthenia Gravis, like most rare diseases is often chronic. Undiagnosed and left untreated it can be life-threatening and can affect all ages and races. The number of reported cases in children is also on the increase.

The condition is so rare that most people have never even heard of it. As it stands, many doctors only have a vague knowledge of the disease so many cases tend to go undiagnosed.

Currently, there is no existing cure for the disease with control by medication being the best thing available to sufferers.

Sarah added: “The association aims to provide the best possible support services for people living with Myasthenia and their families.”

In order to continue the support they offer to sufferers of the disease, the association is also appealing for help from volunteers. Sarah added: “We are appealing to local people who may have an hour or two to spare to volunteer for us.

“Our volunteering opportunities range from helping us to deliver our support services to assisting with fundraising initiatives. We aim to tailor those volunteering roles to the individual to ensure that they are involved in projects which they will find appealing and in line with their own interests.”

Student Volunteering Week 2014 takes place from 24 February to 2 March 2014 so the association is hoping to appeal to students who would like to get involved.

For more information on the association, contact Sarah Sanders:

sarah.sanders@mga-charity.org

07804 775554