Rare diseases awareness day.
7:22am 28th February 2011
(Updated 10:50am 28th February 2011)
Today is rare disease awareness day.
The York branch of the Myasthenia Gravis Association - A charity which provides care, education and support for Myasthenia Gravis sufferers - is taking the opportunity to raise awareness.
Myasthenia Gravis is a nasty muscular disorder.
Symptoms are characterised by fluctuating and sometimes fatal muscle weakness. The body's immune system, in the form of antibodies, attacks and damages nerve signal reception areas, causing a breakdown in communication between nerve and muscle. The result it loss of effectiveness of that muscle. A sufferer of this illness can seem perfectly normal one moment and a few hours or even seconds later is droopy and unable to control that muscle, leading to the comparison to a rag doll.
Ron Middlemass has had Myasthenia Gravis for just over four years, it effects his eyes, but knows of other people in York who are in wheelchairs, or have big problems with breathing and swallowing.
Ron tirelessly fundraises for people who suffer with Myasthenia Gravis and other neurological illnesses. There is no cure for the condition but medication is available to alleviate the symptoms.
Myasthenia Gravis is just one of a number of rare illnesses which will be highlighted today - on rare disease awareness day.
There are hundreds of rare diseases/disorders which get little publicity and the aim is to devote at lease a day a year to educate and inform local communities about various charities which will provide support to sufferers. There is also the opportunity to reach out to sufferers who have a rare illness and do not realise that there may be a support group on their local area.
For more information on Myasthenia Gravis you can click here
For more information on Rare Diseases awareness day click here
And if you want to contact Ron about support in York for Myasthenia Gravis sufferers
you can email him on : firstname.lastname@example.org
or call him on : 01904 679969
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