Renfrew man Michael Conway is aiming to raise the profile of an ultra rare and incurable genetic brain disease this Christmas.
The Paisley Daily Express reported earlier this year about how Michael had been diagnosed with Adrenoleukodystrophy (ALD) – a life-limiting neurological condition which affects one in 20,000 men in the UK – back in 2016.
People who suffer from the rare disease face at least two challenges; not only must they deal with the consequences of the illness afflicting them but they must also battle public misunderstanding.
It is with this in mind that Michael, 56, is trying to make more people aware of ALD and to challenge the stigma associated with having a debilitating disease.
He says he tries to live every day as if it is Christmas – and wants to challenge the perception that his illness makes him less able to enjoy a fulfilling life.
“The main symptoms are severe balance issues (I use crutches), chronic fatigue and poor speed of processing (brain challenges),” explained Michael.
“Despite this, I have an amazingly positive approach to life and I treat every day as if it is Christmas Day. I am 56-years-old, with a loving family and a very supportive employer.
“Having ALD is quite tough. It makes me feel very anxious and vulnerable and I have little control over my life.
However, I am determined to try to ignore it and get on with my life. I really want to treat every day like Christmas Day!”
ALD can cause chronic fatigue, poor speed of processing, slowed thinking and problems with visual memory, poor balance, muscle spasms or weakness, as well as stiff legs and trouble walking.
It is caused by a genetic fault that damages the membrane that insulates nerve cells in the brain. Affected people are unable to process natural molecules called very long chain fatty acids (VLCFAs).
Instead of being broken down, VLCFAs accumulate in the body and destroy the sheath that covers the nerves.
Michael had the following advice for anybody who receives an ALD diagnosis: “Slow down and take things easier than you used to. There will be a lot to take in over a long period of time.”
Michael also wished to thank Alex TLC for all their support. They are the charity who support him. More information about their work can found at alextlc.org
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