Hayleigh Carter, a 21-year-old resident of Birkdale had always aspired to become a professional dancer until her life took an unexpected turn, when she was diagnosed with a rare genetic disorder.
Hayleigh is now dedicated to assisting fellow young Queenslanders grappling with debilitating illnesses, offering them vital therapy and emotional support through Mater’s Young Adult Support Unit (YASU).
Hayleigh’s diagnosis of EDS and Mast Cell Activation Disorder significantly impacts her daily life, affecting not only her connective tissues, skin, joints, and blood vessels but also her organs and bones, severely limiting her functionality. With an estimated one in 5000 people worldwide diagnosed with this condition each year, Hayleigh’s journey is not unique.
“What I am living with is basically bendy joints, stretchy skin and lots of pain,” Ms Carter said.
“I am in so much pain I can’t dance anymore. Some days I am confined to a wheelchair.
“There are days where I can’t even get out of bed.
“I miss my days as an actress and dancer. As a qualified allied health assistant my heart lies in working with children living with disabilities.”
She describes the fortnightly support therapy at YASU as “life-altering”.
“I can’t work, I can’t play sport, and going out to meet friends is a lot of effort,” she said.
“But what I can do is encourage other young people not to sit in silence and to get help.”
Ms Carter’s health battles started when she was just 15. Her struggle has significantly impacted her mental health.
“I have depression and anxiety and have wanted to give up on life so many times, but my mum, who is my carer, and the support workers and team at YASU have been there for me,” she said.
“The care I have received at Mater has been immeasurable. The YASU has been the only place where I have been able to connect with therapists and receive the help I need.”
The Birkdale youth also suffers from multiple other conditions including functional neurological disorder (FND), fibromyalgia and intestinal dismobility, which makes day-to-day activities a challenge.
She also has dysautonomia, which is a dysfunction of the nerves that regulate non-voluntary body functions, such as heart rate, blood pressure and sweating, as well as postural tachycardia syndrome (PoTS), which causes her heart rate to increase very quickly after getting up from sitting or lying down.
Mater Young Adult Support Unit psychologist and team leader Annalise Foster said the YASU provides integrated and holistic strengths-based assessment and evidence-based treatment to help patients like Ms Carter “develop, thrive, prosper and flourish”.
“There are few services specifically for adolescents and young adults in Australia,” Ms Foster said.
“Chronic and complex medical conditions can impact a person’s physical, psychological, social and occupational wellbeing.
“Young people with chronic and complex conditions often face more difficulties negotiating the tasks of adolescence and young adulthood than their healthy peers.”
YASU has doctors, a psychiatrist, psychologists, a social worker, a nurse and an occupational therapist who are dedicated to helping patients live an active and fulfilling life.
Medical reviews, one-on-one mental health support and group programs are also available.
To access the service you must be aged up to 26 years and receiving ongoing service provision from the Mater Hospital South Brisbane for a chronic medical condition.
Published 8-Jan-2024
