Microbiologist Dr Kayley Usher, from The University of Western Australia’s School of Biological Sciences, knows all about the crippling condition arthrofibrosis – she not only researches it but has experienced it personally.
“Most people have probably never even heard of arthrofibrosis – it’s a disease that hides in plain sight, a relatively common complication of joint surgery and injury,” Dr Usher said.
“It’s called by many other names that might be more familiar including stiff knee, frozen shoulder, adhesive capsulitis and frozen elbow, disguising the common pathology; sadly, although it devastates people’s lives, it’s rarely talked about openly.”
Dr Usher, whose own journey with the condition began after a total knee replacement, said the “knowledge black hole” she encountered afterwards left her determined to educate others.
To help do that, the founding member of the International Arthrofibrosis Association has just organised the inaugural Arthrofibrosis Awareness Day in Perth on 20 April.
“Our association is a multidisciplinary group of experts, including people with arthrofibrosis, clinicians and researchers, dedicated to promoting better treatment for the condition and in helping people overcome this crippling consequence of injury and surgery,” Dr Usher said.
“On Awareness Day, Rheumatologist Dr Rob Will along with senior orthopaedic surgeon Dr Steven Singleton from the US and sports rehab physiotherapist Sebasano Nutarelli from Switzerland, will all participate via pre-recorded interviews, with participants able to log in.
“They’ll be able to watch arthrofibrosis experts discussing world’s best practice and evidence-based treatments and learn from international patients who’ll join via social media, posting their experiences.”
Dr Usher said arthrofibrosis can affect healthy people of any age, with research showing that five to 15 per cent of people who have an ACL repair or total knee replacement will be afflicted.
“Early, specialised treatment is essential for preventing this crippling condition from becoming chronic but lack of recognition of the condition means that few people are given the early diagnosis and treatment they need,” she said.
“Aggressive exercise and therapy are frequently recommended however they can be extremely detrimental to long term outcomes.
“People with arthrofibrosis are often left feeling abandoned, frustrated or traumatised when the doctors or specialists they turn to aren’t able to help.”
For more information on the Arthrofibrosis Awareness Day and expert videos click here.