A MAN is raising awareness of living with a rare disease in the hopes it will encourage people to be "kinder" to others.

Michael Conway, who lives in Renfrew, was diagnosed with Adrenoleukodystrophy (ALD) in May 2016 following years of tests. 

He first went to his GP in 2010 after noticing he was shuffling his feet when walking and was referred to the neurology department at the Queen Elizabeth University Hospital. 

Glasgow Times:

ALD, which affects one in 25,000 males, is a genetic disorder that affects the white matter of the nervous system and the adrenal cortex. 

Currently, there is no cure or medication. 

Michael was originally diagnosed with Multiple Sclerosis (MS) on Christmas Eve in 2015 but further testing revealed he had ALD. 

READ MORE: Elderslie mum raising awareness of need for bereavement education for Rare Diseases Day

He said: "Everyone’s heard of MS and there is medication for it so when I got told the second time about ALD I felt a little bit empty because you’ve got this disease and there’s no cure, there’s no medication, you just need to deal with it.

"But I soon dusted myself down and got on with it because there’s nothing else for it, all the crying isn’t going to change it.

"I think having that attitude to life has helped me."

Glasgow Times:

Those living with ALD often suffer from chronic fatigue, slowed thinking and problems with visual memory, poor balance, muscle spasms or weakness, stiff legs and trouble walking, and bladder control issues. 

Michael says that those with the disorder have to "slow down" but he stays positive.

He said: "I do sleep an awful lot, yes, but when I wake up I try and make the most of life."

Glasgow Times:

For Rare Disease Day, Michael says he wants to raise awareness of what it's like to live with a rare disease, and in particular ALD. 

He said: "Nobody’s heard of it.

"I would like people to know more about it, to know that it exists and how it’s affected me and to be kinder to people.

"I wouldn’t have heard of it if it wasn’t for myself.

"My father had Motor Neurone Disease so I was already aware of neurological conditions but when one came to my door I’d never heard about it.

"I just want to make sure other people know about these things."

Michael is thankful to have a very supportive family, as well as "fantastic" support from his employer and charity Alex TLC who were able to provide funding for adaptions to his home. 

Michael works for BAE Systems and says he was moved into a new role, given a medical pass for the car park, and provided with a new chair, keyboard and mouse to ensure he could continue working. 

Rare Disease Day is recognised on February 28 by people in more than 85 countries around the world to raise awareness of the 300million people living with a rare condition across the globe.