Motor Neurone Disease (MND) is a neurological condition which affects the nerves in the brain and spinal cord. In some countries it’s known as ALS. MND affects a person’s arms and legs resulting in the need of a wheelchair whilst losing the ability to do basic things like wash, feed and dress yourself. It affects your ability to swallow food and drink which leads to the need of a percutaneous endoscopic gastrostom (PEG) feeding tube, to maintain nutritional intake as swallowing becomes impossible. Your voice is compromised and people are unable to talk meaning communicating is difficult. Breathing muscles are also affected, which leaves you relying on a ventilator to breathe. All these symptoms occur whilst your mind is unaffected.
The average life expectancy is just 2-5 years from the onset of symptoms
A third of people diagnosed will die within a year and half within 2 years.
It’s a 1/300 lifetime risk in the UK of being diagnosed with MND. That’s 3 children in each and every school today.
There is no known cause of MND and there is no cure or effective treatment, it’s always fatal.
MND is NOT a rare disease as often described and doesn’t only affect people aged 50+. There is a serious lack of awareness and more importantly funding. There is a lot of research going on and signs of promising treatments in the future