The Kids Research Institute Australia researchers are investigating the physical and psychological impacts of powered standing wheelchairs for boys suffering from Duchenne muscular dystrophy.
Duchenne is a progressive, degenerative muscle wasting condition that affects one in every 3,500 boys and in rare cases one in every 50 million girls. There is no cure, and life expectancy is mid to late twenties.
This research is at the forefront of maintaining quality of life for boys suffering from the disease when they lose the ability to walk. The research will look at the wheelchair’s impact on respiratory, musculoskeletal, gastrointestinal, urinary and psychosocial health, and is being funded by a grant of more than $25,000 from the Save Our Sons Duchenne Foundation.
Dr Jenny Downs, Co-Head of Child Disability at the Institute, said “When standing and walking become difficult, boys with Duchenne muscular dystrophy are provided with an electric wheelchair to maximise their functional mobility and independence.
“Using a standing frame for standing can be limited by the burden of transfers from wheelchair as the children become heavier. By controlling movement with a joystick, this new standing wheelchair provides much easier and independent attainment of the standing position,” Dr Downs said.
“This study will quantify the benefits of using the standing wheelchair in boys with Duchenne muscular dystrophy who have difficulty standing and walking.”
Save Our Sons Duchenne Foundation have obtained funding to support the purchase of standing wheelchairs for over a dozen boys across the country. This new grant enables the boys and their family to be recruited to the current trial.
Executive Officer of clinical care and advocacy at Save Our Sons Duchenne Foundation, Klair Bayley, says the Foundation is delighted to be funding the study.
“Presented with adversity, we believe it is our responsibility to help all those affected by Duchenne. The research being done by The Kids Research Institute Australia is critical to improving everyday quality of life for those living with Duchenne and the evidence gathered will help us to secure much needed funding for enhanced equipment in the future.”
Klair’s son, 15 year old Logan Bayley, was diagnosed with Duchenne at the age of five. He is one of the boys who are participating in the study.
"My standing wheelchair has given me back what Duchenne had taken away – my ability to stand tall, and be eye to eye with my friends," he said.
The study will be carried out for a further 2 year period, commencing this year.
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About Duchenne Muscular Dystrophy:
Duchenne muscular dystrophy is the most common muscle diseases of childhood, with one in every 3,500 newborn boys have Duchenne. Very rarely it also affects girls (approximately 1 in 50 million girls).
Symptoms usually appear between ages two and five years, with the first muscles affected being those around the hips and upper thigh. Weakness gradually progresses to include all the muscles used for movement (skeletal muscles), the muscles used for breathing and the heart.
About Save Our Sons Duchenne Foundation:
Save Our Sons Duchenne Foundation is Australia's peak body for Duchenne Muscular Dystrophy fighting to find a cure for all affected worldwide.
The Foundation funds clinical trials, nurses into children's hospitals and equipment to enhance quality of life.
To learn more visit: www.saveoursons.org.au