Treatment a real life-saver

It was an unusual milestone for Esperance man Garry Wilson when he went in for his 101st Eculizumab infusion this week.

The fortnightly treatment, normally called Soliris, has given him the opportunity to fight a rare disease known as paraoxysmal nocturnal haemoglobinuria, which has a 50 per cent survival rate.

For many years, the avid-hockey player and father of two was uncertain of his future as the life-saving treatment was not readily available in Australia.

It was only after furious lobbying from the PNH Support Association that the Federal Government included the treatment in the Life Saving Drugs Program in 2010.

It has since helped more than 100 people living with the disease.

PNH is a disease of the bone marrow which affects the blood and major organs.

It is caused by an injury to a bone marrow stem cell, but develops without warning and can affect anyone at any time.

Symptoms are typically discolouration of urine, fatigue and abdominal pain.

It was the "coke-coloured" urine that prompted Mr Wilson to have a check-up in 2001 after what he described as a fairly minor injury.

"I told the doctor what I had and I was feeling tired all the time," he said.

"We did a few blood tests and about three weeks later I was diagnosed.

"It was initially very frightening when I found out there was a five to 10-year life expectancy."

The first person to be diagnosed with the condition in WA, Mr Wilson quickly found there was not a lot known about the disease and treatments were not readily available.

He managed it with iron infusions and steroids, but he was constantly fatigued and struggled to keep up with his young twins and a busy work life.

A breakthrough occurred in 2009 when the PNH Support Association was formed, giving people living with the disease a platform to lobby for Soliris treatment.

Mr Wilson played a big part in WA in advocating for the treatment.

Now hailing it as an "almost cure", he has surpassed his initial prognosis.

"That's the fantastic thing about the Soliris, it gives you that longevity back into your life," he said.

"From the very first treatment, it cleared up the colour of my urine in a matter of hours.

"I feel fantastic, I live a healthy, active lifestyle, my 10-year-old twins keep me occupied and I go to sleep at a normal time instead of 8pm … (as) I used to do before."

Although life has improved dramatically for him, Mr Wilson said it was still important to keep the disease in the public eye, as many could have it without knowing it.

"When you look at the statistics… we should have 10-15 more people here living in WA with it," he said.

"People could have the symptoms, but they put it down to things like work commitments or lifestyle."

Grateful for the second chance at life, Mr Wilson said he was a better person because of his illness and looked forward to a bright future.