All money raised goes directly to the Myasthenic Gravis Association and does not contribute to my travelling expenses.
Hi everyone!
As you are now probably aware, on the 4th of September i will be jetting off to the Sahara Desert in Morocco to embark on a 100KM trek over 7 days! I know i will find this very tough but I am raising money for a very deserving and yet little known charity - the 'Myasthenic Gravis Association'. If you would like further information about my trek please follow the below links-
http://www.charitychallenge.com/pdf/Sahara_Desert_Trek_Itinerary_2010.pdf
The Myasthenic Gravis Association (MGA) aims to provide a care and support network for Myasthenia and LEMS (Lambert Eaton Myasthenic Syndrome) patients and their families. It promotes research aimed at understanding what causes these disorders and at developing better treatments for both these auto-immune diseases.
Myasthenia Gravis literally translates as "severe muscle weakness". In MG sufferers the voluntary muscles are affected whereas in LEMS the condition affects both the voluntary and automatic muscles. Basically in both MG and LEMS the body produces antibodies which attack the connection between the muscles and the nerve endings and cause a breakdown of communication between them so that the muscles are no longer able to function properly
I am taking on this challenge to raise funds for the MGA Association because my friends mum (Susan) has LEMS. There are two types of LEMS. In some cases patients have or will develop cancer, whilst in others, like Susan, the reasons for developing LEMS are completely unknown.
LEMS affects different people in different ways and to differing degrees. Reading back and not being a medical person, I think it's easier to just tell you how LEMS affects Susan.
In January 2008, in the space of 5 days she went from a normal healthy woman to one who could only stagger a few steps, had no saliva, difficulty chewing, swallowing, breathing, speaking clearly, lifting her arms, had double/blurred vision and could no longer perform day to day tasks we all take for granted. All of these symptoms caused by extreme fatigue of the muscles involved.
There is currently no cure for LEMS and the drugs she is on / treatment she has to have, have quite wide ranging unpleasant side effects of their own.
The MGA directly funds research that Susan's Consultant carries out into LEMS so could hopefully one day lead to finding a cure for this nasty auto-immune disease.
Thanks for your support,
Steph x x x
