A CAMPAIGN by an inspirational former Ferguson's shipyard worker to raise awareness about a rare and incurable disease has been given the royal seal of approval.

Port Glasgow man Michael Conway - who was diagnosed with Adrenoleukodystrophy (ALD) in 2016 - has received a letter of support from the Prince and Princess of Wales.

Michael, 56, wrote to their Royal Highnesses as part of a seven-year drive to raise awareness of the debilitating condition and to promote further action on finding a cure.

ALD is similar to multiple sclerosis in that it damages the fatty tissues covering the nerve fibres, affecting his mobility, thought processes and causes chronic fatigue.

A letter of support, sent through William and Katherine's private secretary at Kensington Palace, states: "Their Royal Highnesses were grateful to you for being so open about the condition you have and the challenges it can cause.

"They were both encouraged to hear about your positive approach to life and importantly about the support you receive from your family and employer.

"It sounds as though they are invaluable."

Greenock Telegraph:

Michael - who worked at Ferguson's for 20 years - said he was delighted with the reponse.

He told the Telegraph: "Over the last few years I have been living with this rare condition that affects one in 25,000 males in the UK.

"I wrote to the Prince and Princes of Wales to raise awareness and I am pleased they replied supporting my campaign."

Michael, who has now worked for BAE Systems as an estimator for 22 years, said his ALD was diagnosed after he started stumbling.

He said: "I thought was was just being clumsy.

"Initially I was tripping up all the time and had to hold on to the filing cabinets at work."

He started seeing a consultant neurologist and had several MRI scans of his head and neck, he also had a series of other procedures, lumbar punctures, nerve conduction and blood tests.


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Doctors initially thought Michael had MS but re-diagnosed him after he revealed that his uncle had Addison's Disease, a rare disorder of the adrenal glands.

Greenock Telegraph:

Michael said: "That took my neurologist down a different path.

"I had to ask the question, would it kill me? I've got this piece of paper but what did it mean? I had never heard of ALD before.

"I had got the answer but there was no cure or medication."

Tragedy struck the family when Michael, lost his brother Christopher aged only 21, and his late father Alexander who also worked in Ferguson's passed away, aged 58 in February 2002, two years after being diagnosed with Motor Neurone disease.

Michael is married with a grown up daughter and son, two grandchildren with another one the way in September. 

Despite the personal tragedy and daily challenges he faces, Michael is remarkably upbeat and positive.

He said: "Both me and my wife have had our health issues but we have come though it together."

Michael added: "BAE have been a model employer, they have given me a car parking space and a work adjustment passport which means they have agreed to help me to my job with my disability.

"I cannot depend on medication, as there is none. I've got to do it myself and that gives me the incentive to keep going.

"I feel being positive has helped me and having my work and family, though I have had to change the way I work.

"I am not good early morning, when I waken every day, I feel as if I have been through eight rounds with a boxer. I have not had a good night’s sleep for 10 years."

Michael has also been asked to give a presentation by his employer at a conference in Preston in October.

He said: "I've been asked to give my lived experience. I have also kept a diary about my experience of ALD. If someone had given me a diary when I was diagnosed, I would have read it."

Michael is also calling for infants to be tested as new stem-cell treatment can help if the condition is caught early enough.