Hornchurch woman unable to speak from severe fatigue condition challenges carers to 24 hours of silence
PUBLISHED: 15:00 25 July 2018 | UPDATED: 15:10 25 July 2018
Hornchurch resident with a severe chronic fatigue syndrome is challenging her carers to remain silent for 24 hours to raise funds and awareness.
Amanda Jane Hendrie has severe Myalgic Encephalomyelitis (ME) a chronic condition which limits a person’s ability to carry out ordinary daily activities.
For Amanda, this means being bed bound 24/7, tube fed and living with multiple systemic symptoms.
Once a year on Severe ME Remembrance and Awareness day on August 8 Amanda runs an online campaign called The Silence Challenge for Severe ME to raise funds for the 25per cent ME Group charity which she describes as a, “lifeline”.
With the aid of her carers, she told the Recorder: “I can’t speak due to the muscle problems experienced with ME, so I need to communicate with my carers via signs - which is like a game of charades at times.
“One year as it was approaching Severe ME Remembrance and Awareness day, during a game of charades with my carer, I challenged her and all my carers to a sponsored 24 hour silence to raise awareness and funds for this charity.
“This challenge went online and is now an annual event to sponsors my carers, plus others to take part and do their own sponsored silence.”
Amanda has had muscle problems since she was diagnosed with ME at the age of 11, but it wasn’t until after the death of her mum that she lost the ability to speak as the seizures were too much for her muscles.
Her condition has landed Amanda in intensive care, fighting for her life in hospital.
“The silence represents those of us with severe ME who can’t speak,” said Amanda.
“It also represents that the reality of severe ME is still a taboo subject.
“There’s a lot of myth and ignorance around severe ME and very little awareness of the reality.
“This ignorance can be intense, causing more suffering and deterioration to those with this condition.”
Amanda has been running the campaign for three years now and last year she raised £700.
To support Amanda and the campaign visit her donation page.