Renfrew man hasn’t had a proper sleep in eight years because of rare genetic disorder

A man living with a rare condition is aiming to raise the profile of the disease this September for Leukodystrophy Awareness Month.

Michael Conway, from Renfrew, was diagnosed with Adrenoleukodystrophy (ALD) – a life-limiting neurological condition which affects 1 in 20,000 men in the UK – in 2016.

You are reading: Renfrew man hasn’t had a proper sleep in eight years because of rare genetic disorder

People who suffer from rare diseases 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.

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It is with this in mind that Michael, 55, is trying to make more people aware of ALD. He confesses that when he was diagnosed, he too was in the dark as to what ALD was.

“When I was diagnosed with Adrenoleukodystrophy on May 16, 2016, I didn’t quite catch the name of the disease”, said Michael.

Finding the unfamiliar name difficult to remember, Michael had to ask medical professionals to write it down so that he could see the name of what he was dealing with.

Michael was diagnosed with Multiple Sclerosis (MS) on Christmas eve of 2015. But it wasn’t until the following year that doctors would get to the bottom of what it was that was actually afflicting him.

He added: “I was almost ready for anything.

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“I was waiting for about six years for a diagnosis, after many MRI scans, lumbar punctures and other tests, so was relieved to get a name put on it, whether MS or ALD.”

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Michael says the disease affects his daily life in various ways, explaining: “Every morning when I wake, I feel as if I’ve went through 10 rounds with a boxer.

“I suffer from chronic fatigue and I am tired all of the time. I haven’t had a refreshing sleep for over eight years.

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“I need to walk with crutches or I will fall. When my brain sends a signal to my feet to lift over a kerb, the faulty wiring in my nervous system means I will nearly always stumble.

“My concentration and short-term memory skills and speed of processing is poor.”

Despite the severe impact ALD has had on his life, Michel has striven to not let the disease get him down emotionally, he has continued working at BAE Systems and says he tries “see the best of things and avoid any negative or unhelpful thought”.

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 the charity Alex TLC for all their support over the years and his employer BAE Systems where he has worked for 20 years.

Find out more online at ulf.org/event/leukodystrophy-awareness-month

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