Scots grandad living with ultra rare incurable disease says everyone should be tested at birth

Michael Conway suffers from Adrenoleukodystrophy (ALD) - a life-limiting neurological condition which affects 1 in 20,000 men in the UK.

Michael Conway who works at BAE Systems, is battling neurological condition ALD

A granddad who lives with an ultra rare and incurable genetic brain disease believes everyone should be tested at birth for the condition.

Michael Conway suffers from Adrenoleukodystrophy (ALD) - a life-limiting neurological condition which affects 1 in 20,000 men in the UK.


The 54-year-old says he is sure more could be done to help young boys with the disease if testing was carried out at a young age.


I don’t want to bolt myself on to any campaign really, but I do think babies should be tested early on for ALD. If it is identified early, things can be put in place to help,” he explains.


Dad-of-two Michael was finally diagnosed with the condition in May 2016, after years of tests.


“I remember it was the night of the Royal Wedding with Kate and William in 2011. I was going to meet some old pals from work and at the Brewers Fayre at Braehead and I found myself scuffing my feet, and I felt tingling in my fingers,” he explains.


“That was the first time that I thought I better get checked. Before that I was knocking things over and just thought I was a clumsy person.”


It would take another five years and at least one misdiagnosis to find out he had ALD.

Michael, from Renfrew, said: “On Christmas Eve 2015, the neurologist told me it was MS and, to be honest I was quite relieved".

Michael on his wedding day with wife Carol Ann

“I felt I finally had a diagnosis, but, after further tests and scans, it turned out that wasn’t what I had.”


ALD is a degenerative genetic disease caused by mutations in the ABCD1 gene, resulting in the accumulation of saturated very long-chain fatty acids inside cells.

These can affect the brain and the adrenal glands.


This fatty acid then builds up in the body and wears down the protective layer (myelin) around the brain, spinal cord, adrenal glands. This results in problems with how the brain and muscles work.


A sufferer is born with it and it affects men, but women can be carriers of the gene.


Michael said: “I have been told that some GPs will go through their entire career and never come across this condition, it is that rare.”


Michael has worked as an estimator for BAE Systems - Naval Ships at Scotstoun for nearly two decades despite his life-limiting illness.


“It is hard sometimes. I suffer from fatigue a lot of the time. I walk with a stick and my short term memory is quite badly affected, as is my balance,” he adds.


“But my employer has been really supportive throughout, from when I first started experiencing symptoms through to my diagnosis.”


With Rare Disease Day coming up on February 28, Michael says it is important people know about ALD and the impact it can have.


He explained: “I just want people to know about the condition, and other rare conditions like it."

“I live with it and life is as normal life as possible, but it can be hard.


“I want to thank my wife Carol Ann and my children Matthew and Rachel for their support and also AlexTLC, the charity which supports people with ALD. Without their help and support, life would be much harder.”



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