Damian Slater was diagnosed with inclusion body myositis (IBM) at 35 years old – just six months after he got married – making him one of the youngest in Australia to be diagnosed with the disease.
He is one of fourteen West Australians currently participating in a large international clinical trial to test a treatment hope for this rare muscle disease.
The WA Neuroscience Research Institute is managing the WA site for the trial under the supervision of Assoc/Professor Merrilee Needham, one of Australia’s foremost experts on the disease.
A/Professor Needham (pictured) leads the Perron Institute’s neuromuscular research and heads the neurology department at Perth’s Fiona Stanley Hospital.
She said “While it is classified as a rare disease, inclusion body myositis is the most common acquired muscle disease for people over 40 and currently there are no cures or approved treatments to help those who suffer from it. We are hopeful this new drug will help patients keep stronger for longer.”
Damian first started to show signs of weakening muscles in 2006, when he began to fall over quite frequently and noticed himself struggling with day-to-day activities like climbing stairs and lifting heavy items.
Damian says he and his wife Carmen kept putting their concerns to the side, often blaming tiredness for what he was experiencing whilst becoming increasingly concerned by his declining physical abilities.
“I kept making excuses for why I was falling over, like I must have been really tired that day or even that I might have had too much wine the night before.”
It took a car accident in 2008 for Damian to receive a complete medical check-up which resulted in a diagnosis of IBM being made.
The diagnosis was devastating for Damian and his partner, Carmen, who had only been married six months earlier. But they have committed to looking positively to the future and in 2010 welcomed their son, Isaac, now 4 years old, into their lives.
Damian – who still works full time in an operational role at Qantas Airlines – says the hardest thing about living with his condition has been the limitations it puts on what he can do with his young son.
He uses a walking frame or crutches to assist him in walking and must avoid all uneven or soft surfaces due to severe muscle weakness in his legs and feet which makes it very difficult to walk unaided.
Damian said “it’s really tough not being able to do all those things you naturally want to do as a father, like kick a ball with your son or just walk along the beach together.”
“Isaac is just amazing though, he’s grown up alongside me having these physical limitations and he’s just adapted to them and is always the first to open a door for me or spot a tripping hazard.”
“That kind of support from your four-year old son is pretty incredible but it’s heart-breaking too.”
Damian said his greatest hope in taking part in the drug trial is that the treatment might help him to do more with his young son and wife.
Damian said his wife’s loving, positive outlook is his greatest motivator and that as his rock she gives him to strength to carry on each day, adding that “she still asks me to hang out the washing, of course.”
More on the clinical trial
IBM affects around 30 people in Western Australia and there is currently no effective treatment, with the majority of patients requiring some type of assistive device – such as a wheelchair – within 10 to 15 years after the disease first sets in.
The one to two-year trial that is currently underway is a Novartis Pharmaceuticals sponsored trial involving 240 people worldwide, with Australia contributing the second largest number of trial participants (after the US) with trial sites being open in Melbourne, Sydney and Perth.
It is a double-blinded placebo trial which means that neither Damian nor Professor Needham know at this stage whether Damian is actually receiving the active drug or placebo.
Damian said he hopes the treatment proves successful and is accepted as an approved treatment.
Damian won’t know the details of his treatment within the trial until after it is completed and said “I’m obviously really keen to know what I’ve been on during the trial but I’ll have to wait and see.”
The international trial is due to finish in December this year. Patients who complete the trial may be able to enter an additional two year study. The international trial is due to finish in December this year. Patients who complete the trial may be able to enter an additional two year study.
Find out more about current clinical trials at the Perron Institute.
Pictured: Merrilee Needham with patient