Michael tells us about his diagnosis of Adrenoleukodystrophy (ALD), what he has done to raise awareness of the condition and the support he has received from his employer
On 16th May 2016, after six years of testing, my neurologist called me into his office at the Queen Elizabeth University Hospital in Glasgow.
Earlier, on Christmas Eve 2015, he told me I had Multiple Sclerosis but was going to continue testing, as I had mentioned that one of my relatives died with Addison ’s Disease.
He went on to confirm I have this incurable disease with 20 letters and I could barely understand its name. I asked him to write it down for me and this is what he wrote.
Shortly afterwards, in early 2017, I asked my neurologist to confirm my diagnosis and this is what he said.
“Mr Conway attends the Neurological Service at the Queen Elizabeth University Hospital, Glasgow, with a confirmed diagnosis of the rare condition adrenoleukodystrophy.
Adrenoleukodystrophy is a degenerative neurological disorder which results in chronic and progressive symptoms of reduced mobility, unsteadiness and memory problems”.
Since my diagnosis in May 2016, I have been supported well by my employer. Despite the challenges, I am still working full-time. I have a Working Adjustments Passport (WAP) & a Personal Emergency Evacuation Plan (PEEP). I also have a dedicated car-parking space in the shipyard.
My story has been featured in many areas of the media, including BBC Scotland, the Daily Record, The Herald, including It’s time we screened babies for my faulty gene – BBC News.
There has been 32 stories, including:-
Campaigner from Renfrew wants newborn babies to be screened for rare brain illness – Daily Record
ALD sufferer receives support from William and Kate | Greenock Telegraph
Port health campaigner receives support from Pope Francis | Greenock Telegraph
I have been sent supportive letters from the Prince & Princess of Wales, Pope Francis & the First Minister of Scotland.
My employer has encouraged me to raise awareness of ALD and I have spoken to various groups, including one at Preston on front of over 100 ethics managers.