May marks the beginning of Cystic Fibrosis Awareness Month. The disease that left 25-year-old Sam Gair with a collapsed lung and now, he’s running to save his life.
Last year, Sam was abroad in England when disaster hit. He had suffered a pneumothorax, a condition which leaks air into the space between the lung and chest wall.
The incident left him with a maximum lung capacity of 33 per cent, presenting him with two options: wait for medical advancements in treatment that could save his life, or have a double lung and liver transplant.
“If you have a lung transplant, the survival rate within the first year is not exactly high. It’s about 75 per cent,” Sam explained.
“As you get older, you’re on immunosuppressants for the rest of your life, which is a bit of a pain because that stops you from travelling and stops you from going out in public places. If you get sick, you’re immediately in hospital. It’s pretty rough.”
Sam is leaning towards waiting for a treatment, and will participate in the South West Rocks Running Festival for Cystic Fibrosis Awareness Month to raise money to fund research for the treatment of the disease.
The young Northern Beaches local will be running 10km, which is a tenacious feat for someone with only 33 per cent lung capacity, and his unshakeable attitude doesn’t differ while training.
“Every time I step on the treadmill, it doesn’t take long for me to be out of breath. So basically, it’s just pushing myself to the absolute limit every time,” he said.
“I really try to just increase that ability for my lungs to just take in as much oxygen as possible. And just keep running.”
With a fundraising goal of $5,000, Sam is almost there with under a week to go. Much like his vigorous training, he will not be slowing down as every dollar provides a better chance for research into treatment.
What is Cystic Fibrosis?
The genetic disease occurs when the Cystic Fibrosis Transmembrane Conductance Regulator gene (CFTR gene) mutates and changes the protein that controls the salt and water levels in cells.
This causes an influx in the production of mucus, sweat and digestive fluids, which primarily damages the lungs and digestive organs.
It causes an array of issues, including lung and sinus infections, bowel movement problems, diabetes, poor growth, shortness of breath and even infertility.
Confiding in others with the disease also proves difficult. Sufferers of CF aren’t encouraged to socialise, as cross-contamination can be extremely dangerous.
Sam has never met anyone with his condition physically, but he has chatted to people online.
Over 3,700 people are living with CF in Australia and with an average life expectancy of 55 and a baby being born every four days with the disease, the race for a cure is on.
A Day in the Life
Cystic Fibrosis occurs when two people carry the CF gene have a child together – one in 25 people carry the recessive CF gene.
Typically, doctors diagnose babies with CF not long after birth once parents notice their infant is not eating due to digestive problems caused by the disease.
Sam hasn’t spent a lot of time out of the hospital or even a day without taking medication; in fact, he spends much of his time meticulously performing tasks to stay alive.
“I wake up in the morning and I spend an hour doing treatments: breathing, coughing, spluttering, trying to get rid of that mucus in my lungs. Then I’ll go to the gym, I try to maintain a healthy weight… then I’ll go to work in the afternoon. And then do the same exercise, same breathing techniques again. And all the while, I’m taking pills and injecting myself with insulin,” he said.
“There’s a bit of a strict regime, in order to keep myself able to survive.”
There’s no room for a holiday when living with this debilitating disease. Sam was stranded abroad in England when his lung collapsed, as it would’ve been too dangerous to transport him home.
It was a catch-22 as he couldn’t leave, yet the miserable London weather was making his condition worse.
Sam was eventually transported home via plane, hooked onto a heart rate machine, and accompanied by a doctor who consistently monitored his condition.
“It was one of the most frightening experiences of my life,” he recalled.
The run to save a life
After his pneumothorax diagnosis, Sam was given the option of a double lung and liver transplant. Although time is of the essence, the transplant could prove fatal to the young man, and, even if successful, would put a strain on the rest of his life.
Thankfully, there is some hope for a new medication which could prevent the operation from being necessary.
“There is hope on the horizon in the form of a drug called VX 533, that’s in human trials at the moment, to correct nonsense mutations, which is basically any mutation that’s not the common one,” he said.
“We’re hoping that the drug might be able to change a few things around for me.”
The money raised from his run will go to Cystic Fibrosis Australia to fund research towards treatment of the disease, which is of the uncommon mutation variety.
Sam has been a battler his whole life and, as you can imagine, this run for a cure is not out of character, so why not join the fight and donate? It could just save his life and many others.
