LIKE most healthy, active people, Mick Bartlett had no reason to suspect his happy family life was about to be turned upside down.

Despite having always been active and playing sports, the dad of two began noticing he was finding day-to-day tasks increasingly difficult.

What the doctors eventually revealed was a shock that has changed the course of his life.

Mick, 38, of St Vincent’s Chase, Braintree, says: “In December 2011 I was diagnosed with Alpha 1 – Antitrypsin Deficiency (A1-AT). At the time I had no idea what it was or what it meant but as I realised it was a bolt out of the blue.

“It basically means my lungs don’t have the protection most people’s have against infections, vapours and poor air quality. My lungs can’t handle it so they deteriorate and there is no cure for this. It’s a downward spiral.

“In December 2011 my lungs were operating at 35 per cent. By that time I had been gradually getting worse over a year and I was getting out of breath walking up the stairs and even had to sit down when I
went to the toilet,” explains Mick, who stopped smoking five years ago.

“I changed my exercise regime and my diet, but six months down the line there was no change.”

Mick, who works for Milbank Concrete Products in Earls Colne, visited his doctor who gave him an inhaler because his symptoms sounded like asthma.

His son has asthma so there was a link. But after three months of trying there was no improvement so he went back and saw a nurse who referred him to hospital, where he had a lung function test,
blood test, X-ray and CT scan.

The results didn’t match what was expected for Mick’s age. In fact Mick’s 34 year old lungs were comparable to someone aged 112.

“I’d just assumed that I had hit my mid 30s so this is what happens as you get older,” laughs Mick. “But the consultant told me I would eventually be a good candidate for a double lung transplant.

“I was left scratching my head because it was so much to take in, but my wife Kate, went into overdrive. She cleared away all the candles in the house, made sure I wasn’t around open fires.

“But Alpha-1 is a progressive condition. It chips away. On average each year you lose about two or three
per cent of your lung function. When I was diagnosed I had about 35 per cent lung function. I now have 30 per cent. You’re not even put on a list for a lung transplant until you are between 15 and 20 per cent lung function.

"Doctors have said that could take about ten years. By that time you are more prone to chest infections and pneumonia, which would knock me for six. I would never recover that lost lung function.”

Alpha-1 has also meant Mick developed stage 3 emphysema.

He currently uses three inhalers but has to be careful as all contain addictive steroids.

Alpha-1 is an inherited condition when both parents carry a fault gene which is passed to the child.

Mick’s own children will have one faulty gene, passed on from Mick, but also a healthy one from Kate,
which means they are a carrier and could be more prone to certain illnesses, but should not be affected in the same way Mick is.

However both children are now carriers of the gene.

Both Mick’s parents have led a healthy life and are not affected by the gene they have been carrying.

Up until a few weeks ago Mick had no idea who, or how many people suffered from Alpha-1. Being a rare condition, with about one in 5,000 thought to be affected, there were no local support groups for him to
attend and talk through his feelings or find more information.

Then he came across an Alpha-1 convention in Lincoln, organised by the Alpha-1 Support Group UK, where sufferers gathered to share stories, offer support and learn about new medication and treatments.

Mick says: ”While it was great to finally be around people like me, it was also scary. A lot of these people are on oxygen full time. I am not there yet but I could be. People were out of breath just sitting there. "Then there were others who had had successful transplants and told me how it had changed their
lives. These things are all about hope. Hope, and a change of mindset in the mean time.”

Mick, who was being treated at Colchester General Hospital, is now a patient at a new clinic in Coventry especially designed for people with Alpha-1.

Run by Dr David Parr, a consultant respitory physician who has a special interest in Alpha-1, the clinic also offers patients access to a team which includes consultants from the lung, liver and skin departments, physiotherapists, dieticians, psychologists, pharmacists and physiologists.
It is one of the first ever such clinics in the UK and Mick has an appointment on December 2.

“I also visit the Papworth Clinic, in Cambridgeshire, every year to speak to the lung transplant man so I remain on their radar,” says Mick.

In June, pharmaceutical company CSL Behring was granted an EU licence for Respreeza, which is made from human plasma and restores Alpha-1 levels in patients through an intravenous drip.

The therapy has been performed in the United States, Canada and some European countries since 1987 but the National Institute for Health and Care Excellence is unlikely to recommend the NHS to start
prescribing the treatment for at least a year.

Mick said: “It doesn’t cure it, but it will stop further deterioration. It costs about £50,000 per patient, per year, and you have to be a certain level of deterioration.

“I am currently one of only around 500 candidates in the UK, but I may not be eligible for this drug if my
lung function drops below 24 per cent – I am currently at 30 per cent. A decision is expected next month.”

“Coming to terms with Alpha-1 has been difficult,” adds Mick.

“It affects all aspects of your life. I can’t run around with my children, it affects the relationship with my
wife, with my children, Harry, 12, and Stanley, ten, my parents. My mum feels awfully guilty, but she didn’t know.

“I am now focussing on my journey over the next few years until I may be in a position for a double lung
transplant,” adds Mick.