Local MSP Aileen Campbell decided to join efforts to raise awareness of the rare Functional Neurological Disorder (FND) afterbeing contacted by a sufferer, her 22-year-old Rigside constituent Michael Rooney.
She was touched and impressed when she heard of Michael’s struggles to make people understand this hidden disability which leaves him without a sense of touch, unable to detect temperatures and liable to collapse without warning.
“I look pretty normal, but I can’t feel anything at all,” Michael said this week.
He was studying to be a chef when he began losing feeling in the bottom of his legs about four years ago, after a bout of near-fatal sepsis.
Doctors carried out all sorts of tests including MRI scans before realising it was FND.
“The biggest thing is that I collapse without knowing. I can just fall down. It does not give me any warning. I can be talking to friends and just lose consciousness,” said Michael.
He tries to stay upbeat and jokes that he is “on first-name terms with ambulance staff”.
Speaking of his condition, he remarked: “It is a different life - a completely different life. People without FND can walk through the streets and feel the wind in their hair, feel the rain on their skin - but I can’t. People ask ‘are you not cold?’ but I don’t know.”
Following initial contact with Aileen’s office, he learned of a support group in Edinburgh and he found meeting others with this rare condition helpful.
Aileen has now raised the condition with Health Minister Joe Fitzpatrick.
The Scottish Government has been holding a public consultation on the National Action Plan on Neurological Conditions, and she wanted to ensure that FND would be included in that.
“Initially, I first met Michael’s dad Arty. He described to me how the family felt that no-one really knew or understood the condition and that they felt awareness needed to be raised, Coincidentally, we found that it is International FND Awareness Day on April 13. That’s why we felt it was important to take this chance to raise awareness locally about this hidden condition and of Michael’s story.
“Michael is incredibly stoic and pragmatic about his condition, but he’s also a young man who wants to be empowered to live a full life and feel supported.
“That’s why I want to make the Scottish Government know about Michael, know about FND and ensure the forthcoming Action Plan supports folk like Michael across Scotland,” added Aileen.