A CONCERT raising money for charity Myasthenia Gravis Association was deemed a ‘wonderful memorial’ to the organiser’s mother.
Carmen Lavin, 65, of Woodpecker Lane, Storrington became a trustee of the association last October following the death of her mother who suffered from the condition.
Ever since, Carmen has actively been trying to raise awareness of Myasthenia Gravis - a little-known but debilitating condition.
She said: “Knowledge can take away fear and bewilderment, and the more people know about the nature of the symptoms, the more sensitive understanding those with Myasthenia Gravis, their families, friends, colleagues and GPs may develop.”
Dozens of pople attended the special concert in memory of Ursula Gill in the Music Room, Champs Hill, Coldwaltham on September 24.
Cellist Philip Handy and pianist Robert Markha entertained the audience, some of whom remarked it was a ‘triumph in every way’, ‘fabulous’, and ‘a super, lovely concert and a great success’.
Those present also left with greater awareness of Myasthenia Gravis and the charitable Association working on behlaf of sufferers and their families.
Anyone of any age is susceptible to the condition. It is an auto-immune disease where antibodies attack and damage the nerve signal reception areas of muscles, resulting in a loss of effectiveness of the muscle.
Common symptoms include droopy eyelids and being unable to smile.
Carmen’s mother, developed these symptoms when she was 83.
Carmen said of her mother: “She was disconcerted but not overly alarmed. What began to be irksome was her swallowing.”
The symptoms progressed and it became difficult for her to swallow solids and then liquids. It then affected her voice and she found it hard to hold her head up.
Initially doctors referred her for an x-ray which showed osteoarthritic loss of disc spaces in her lower back joint, a form of arthritis which is not uncommon for someone in their 80s.
It was two years after her symptoms had started before she was correctly diagnosed by a neurologist.
“Diagnosed, treatment could begin,” said Carmen. “She spent several weeks in hospital and remained on medication, regularly reviewed, for the rest of her life, inspiring those around her to the end.
“She lived to the age of 97 and a half, dying last autumn.”
For more information on the condition visit: www.mga-charity.org.