IT was supposed to be one of the happiest days of his life.
But walking up the aisle, Alistair Hunter's mind was on the devastating news he had been given just hours earlier.
On the eve of his marriage to wife Donna, he finally received a diagnosis for the breathing problems that had troubled him for years
.
He was told he had a rare lung and liver disease – alpha-1 antitrypsin deficiency – a condition which, he was told, would eventually claim his life.
Ten years on, at the age of 51, the once-active carpet fitter is in a wheelchair, virtually housebound, and finds even chewing food a chore. He will be one of several Scots with the disease to attend a groundbreaking conference in the Capital today, which will bring together sufferers, campaign groups and medics.
Mr Hunter, who had to give up his career a year after diagnosis, explained how his life had gone downhill since the disease took hold, adding that it took several appointments for the deadly condition to be picked up.
"I think most people go through the same cycle. At first it is denial, then anger, and eventually you just have to accept it," he said.
"I was always active and running up and downstairs with carpets, but it became harder and harder and eventually I went to see another doctor, who told me I had the lungs of a career miner who smoked.
"I was only 40 at the time and even though I smoked, I kept pretty active. I had to give up work a year later and it's being getting worse ever since.
"It's not like cancer, when they can give you two months or six months to live. Every case of this is different. I'm at the end stages, though – it's eaten most of my lungs. It's my wife I really feel sorry for – she goes to sleep every night not knowing if I'll be here in the morning. I couldn't survive without her. It has been tough for us both."
Not only did Mr Hunter have to quit work, but his 40-year-old wife has also had to stop working to become his full-time carer.
And while his lungs are weak, his heart is strong, and this was proved when he was close to death in January last year following a chest infection.
"I woke and saw family members standing round the bed and I remember thinking they weren't there when I went in – it must have been terrible for them waiting around," he recalled.
"I remember for 15 hours fighting for breath – it was horrible. If someone had given me a gun, I would have used it. It was like having your head thrust in a bucket of water and being let up for a second every now and then, for 15 hours. I was physically weak, but I'm a strong character."
Mr Hunter, who has two daughters from a previous marriage, wants to use the conference to raise awareness of the illness, because many sufferers – thought to be around 2600 in Scotland – don't know they have it.
"I just want people to know, because I thought it was just a cold or a chest infection," he said.
"But now even just breathing tires me out and I need my wife to do everything for me."
Andrew Deans, a respiratory nurse for NHS Lothian, said it was crucial there was more information and debate exchanged about the illness to make life easier for sufferers and their loved ones.
He said: "This is a fantastic opportunity for this patient group and their families to learn more about alpha-1 and how to manage their condition more effectively."
RARE DISEASE IS HARD TO SPOT
ALPHA-1 antitrypsin deficiency is a little known disease which emerges from the liver and eventually destroys the lungs.
Although it is reasonably rare, most sufferers are unaware they have it.
It is estimated in Scotland that around 2600 people have it, but only 120 people are on the official register.
A full lung and liver transplant can expel the disease, but by the time sufferers are aware of it they are often too weak to undergo the surgery.
It is also very difficult to diagnose. Sufferers are born with it, but it can lie dormant for decades, and symptoms are often credited to common respiratory problems.
The full article contains 757 words and appears in Edinburgh Evening News newspaper.
