I'm Lukas Cannan, a 26 year old, who suffers from Cystic Fibrosis (CF). I was diagnosed on the 29th August 1991, at the age of 3. My sister Tahnee was also diagnosed with Cystic Fibrosis on this day. It was a huge shock to our parents who had never heard of this disease and that the life expectancy of the disease at the time was 12 years. The family spent the next 10 days in the Royal Children’s Hospital in Melbourne learning about every aspect of the illness; medications, diet, physiotherapy, basically the best way to tackle this disease. I didn’t like hospital as a 3 years old, I spent those 10 days in my daffy duck slippers, eating rice bubbles for every meal and not wanting a bar of physiotherapy, I have grown out of the daffy duck slippers, I no longer eat rice bubble exclusively and have learnt physiotherapy isn’t the enemy, but I’m still not a fan of hospitals.
Mum, Dad and my older sister Matara have been instrumental in how Tahnee and I grew up and inevitably how we dealt with this illness. They ingrained in us a love of sport from a very early age and we were forever in a stadium, at a football ground or running around an athletics track (for me very slowly). My parents were very supportive of our sport and luckily sport always came before homework (I was never very studious). Mum always said 'if you enjoy what you do you will do it well' and they spent many hundreds of hours in a car driving us to all corners of NSW and VIC even as far as Brisbane and Darwin, meanwhile working full time jobs and looking after the rest of the family and for that we are forever grateful.
Cystic Fibrosis (CF) is a recessive genetic disease affecting 1 in every 2500 children born in Australia, that is approximately 1 child every 4 days and being genetic means both parents have to be 'carriers' of a CF genotype. 1 in every 25 people are carriers of the gene most of them unknowingly just like my parents. CF primarily effects lungs and digestive system of suffers due to a malfunction in the endocrine system which is responsible for producing saliva, sweat, tears and mucus. In CF this causes and abnormal amount of thick Sticky mucus within the lungs, airways and digestive system leading to an impairment of digestive function of the pancreas and trapping bacteria in the lungs resulting in recurrent infections which causes irreversible damage. There are also many other secondary problems that develop in relation to CF these include, the inability to gain weight, diabetes (which my sister Tahnee has), kidney and liver failure, broken bones due to calcium deficiency and polyps just to name a few. Lung failure is the most common and major cause of death for someone with CF. To counteract the symptoms of CF, patients have a strict regime of medications; including both oral and inhaled antibiotics (morning and night) and Physiotherapy/airway clearance to clear the mucus out of your lungs to help open up your airways as much as possible and decrease the risk of infection in your lungs (2/3x daily). We also have creon forte, which are pancreatic enzymes (as our bodies don’t make enough of these enzymes on its own) that help digest our food properly, and we have these every time we eat any food with fat in it (20-30 daily). We must consume a high calorie high protein diet to help put on weight, have regular (quarterly) checkups and possibly hospital stays called tune ups, are also a frequent occurrence with CF patients, resulting in a lot of school and work missed.
In many cases organ transplants are the only option for CF patients to begin to live a normal life, the criteria for a person to be able to receive a transplant is they must be under 30% lung capacity or rapid progressive respiratory deterioration, increasing number of hospitalisations, a rapid fall of FEV1 (forced expired air in the 1st second) and doctors must assess the patient to be a suitable candidate there are age restrictions, or if the patient has a multiple organism resistance to specific classes of antibiotics. The most common transplants are bilateral (double lung) transplants. Other transplants include single lung and heart lung and liver transplants.
To find out more go to http://www.cysticfibrosis.org.au/all/learn .
I’d been racking my brain to think of ways I could give back to the CF community that had helped me so much, increase awareness of CF and raise some money for Research in to treatment and finding a cure as there currently isn’t one. It was a my mate Charles’s wedding on the 18th of October that I decided to grow a beard until 65 roses day in May. Originally it was going to be a solo project but after about 4 weeks of growing a pathetic excuse for a beard, I realised that a cause this close to my heart deserved more people being involved and more of an effort by myself so 65 beards for cystic fibrosis was born with the idea/aim to get 65 blokes to join me in growing a beard for the month of may and shave the beard off on the CF’s national fundraising day 65 Roses Day, Unfortunately I’d told quiet a few people about not shaving for a months so the red beard had to stay until the 29th of May.
Please help by giving whatever you can and by spreading the word about CF, Thankyou in advance for your generosity.