Hayleigh Carter always dreamt of becoming a professional dancer – before a diagnosis with a rare genetic disorder ended her hopes of a career on stage.
But the defiant 21-year-old has found a mission in life by helping other young Queenslanders living with debilitating illnesses to get therapy and emotional support at Mater’s Young Adult Support Unit (YASU).
The Mater Hospital Brisbane patient has Elhers-Danlos Syndrome (EDS) and Mast Cell Activation Disorder, which affects more than just connective tissue, skin, joints and blood vessels.
“It affects every part of my body including my organs and bones causing my functionality to be highly decreased,” she said.
It is estimated one in 5000 people are diagnosed with the disease worldwide each year.
Ms Carter is one of 200 young patients currently receiving support from Mater’s YASU – the only service of its kind in Queensland.
YASU’s specialist multidisciplinary team adopt a developmentally sensitive, trauma-informed and systemic approach to supporting adolescents and young adults (aged up to 26) with chronic and complex medical conditions.
“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.”
Symptoms include overly flexible joints that can dislocate, and skin that is translucent, elastic and bruises easily.
A member of the YASU consumer advocacy group, Ms Carter, from Birkdale in the Redlands, receives fortnightly support therapy at YASU and describes her care 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.”
Ms Carter 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.
