When doctors told him he was suffering from a rare and incurable disease, Nick Mayor simply didn’t believe it.
The former Royal Marine spent years in and out of hospital suffering from seizures that left medics baffled.
After being forced to give up his job working on the Tay Road Bridge because of his poor health, the 64-year-old was given the hammer blow news that would turn his life upside down.
Nick was diagnosed with cardiac amyloidosis – a rare condition caused by deposits of abnormal protein in the body’s tissues and organs.
The once fighting-fit grandad has lost 4st 10lb and is often unable to dress himself without help.
But he is now determined to raise awareness of the illness and believes there should be more support available to sufferers.
“Living with this is soul-destroying,” Nick told the Tele.
“Nobody knows about it, it’s a very rare disease and we certainly hadn’t heard of it.
“I’ve come to terms with it now but I couldn’t at first.
“It started about eight years ago when I had taken a series of mini-strokes but they just gave me some paracetamol for it.
“But a couple of years later I started to take seizures and my peripheral vision was starting to worsen.
“I was tired all the time and in and out of hospital and they just couldn’t get to the bottom of what was causing the seizures.
“My doctor then sent me to University College London to get tested at the specialist centre and that’s where we found out.
“I want people to see and hear about this and what it does to people.
“There are no specific experts of amyloidosis in Scotland and at the moment we’re not getting enough specific support.”
Multiple tests have been carried out on Nick, including trials for new drugs in London.
The possibility of a heart transplant in Birmingham has also been discussed.
The disease has also had an impact on Nick’s wife Jac and daughter Carrie, who offer him daily support.
He discovered the condition is hereditary and could affect other members of his family.
Nick frequently suffers from exhaustion and difficulty eating throughout the day, and suffered a mild heart attack in April.
While his physical health has taken a serious toll on him, the Tullideph Road man says his mental health has also deteriorated.
He added: “If you have cancer or dementia people immediately know what that is. But with this, people didn’t know what to do.
“I didn’t get any post-diagnosis support.
“It put me in a really dark place. The whole thing is just so frustrating considering I’ve always worked and been in the Marines.
“I just feel helpless.”
Nick receives weekly therapy at Roxburghe House and was donated a mobility scooter by Poppy Scotland and the Royal Marines Association.
Meanwhile friends and family have rallied round him.
Nick added: “The nurses and doctors I see do what they can and it’s amazing.
“I’ve had a lot of help from my wife and my daughter. Just that little bit of a boost goes such a long way.
“Even my friends who come and take me to the barber or whatever, it means a lot.
“But there might be people out there who don’t have the help I’ve been getting.
“The more people know about this the better.”
Incurable disease can cause organ failure
Amyloidosis is a rare condition that causes a build-up of abnormal proteins in the tissue and organs.
The disease is incurable and as many as 600 new cases are reported in the UK each year, according to the NHS.
In their amyloid form, the proteins do not break down as easily as they normally would.
If the build-up of protein causes the tissues or organs to stop working properly, it results in amyloidosis.
The amyloid deposits occasionally only affect one part of the body but more often it affects several different body parts such as the heart, kidneys, liver or nerves.
Signs of the ailment include tiredness, weakness, loss of appetite, shortness of breath, oedema (water retention), numbness and an enlarged tongue. Chemotherapy is often used to treat the disease, but it does not offer a cure.
Those diagnosed with amyloidosis will also have to receive treatment for organ failure and have regular check-ups every six to 12 months to monitor whether the condition is returning.
The outlook for those with the condition varies depending on age, general health and the extent of the amyloid deposits.
Overall, many people now survive for several years after they are diagnosed with the condition and increasing numbers of people are living for a decade or more.
The only main facility dedicated to the treatment of amyloidosis is the National Amyloidosis Centre, based at the University College London.
Those who have suffered from the illness include former deputy first minister of Northern Ireland, Martin McGuinness, who died in March 2017.
Periods of remission are possible after treatment but amyloidosis will become active again after a period of time.