NSW CHAMPION

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Stephanie Kelly (she/her)

LIVED EXPERIENCE
Disability & Chronic Illness

KEY INFORMATION

Place of Birth: Sydney, New South Wales, Australia
Current location: Sydney, New South Wales, Australia
Age: 26 years old
Language/s: English only
LGBTQIA+: No
NDIS Participant: No
Diagnoses: Postural Orthostatic Tachycardia Syndrome, Gastroparesis, Intestinal Failure, Superventricular Tachycardia,  Atrial Fibrillation, Polycystic Ovarian Syndrome, Chronic Pain, Left Brachial Plexus Injury, Neck Injury,  Hypokaelemic Periodic Paralysis (HKPP), Hypermobile Ehlers-Danlos Syndrome
Healthcare Access: Primary Health Care, Allied Health, Mental Health, Secondary and Tertiary care

BIO

Stephanie's experiences of the healthcare system began as an infant with Vesicoureteral reflux (VUR), and heart episodes later diagnosed as severe refractory Superventricular Tachycardia (SVT) and atrial fibrillation (AT) requiring hospitalisation, defibrillation, heart surgeries and medication. Describing herself as a 'heart kid', Stephanie built great empathy to the impacts of cardiac events on the lives of young people. At one point, she was unable to stand or walk safely due to the instability of her heart and blood pressure, therefore was a wheelchair user for 2.5 years. Stephanie's challenges with her heart continued into her career, where she pursued her dream of working as a paediatric nurse to contribute back to the healthcare system, however would often end up in the Emergency Department in between shifts to receive defibrillation (electric shocks to the heart in order to reset normal heart rhythm). Transitioned from the paediatric to the adult system in an exemplary way, Stephanie is a strong advocate for person-centred models of transition care.

In March 2018, Stephanie was in a car accident where she suffered a brachial plexis (network of nerves in the shoulder) injury requiring extensive physiotherapy and rehabilitation to regain use of her arm, and was forced into medical retirement at 22 years old. One year after the accident, gastrointestinal symptoms began - becoming evident when she began to vomit undigested food long after eating, prompting a diagnosis of gastroparesis and beginning a journey of enteral feeding. First a nasogastric (NG) tube, then nasojejunal (NG) tube, before a PEG (gastrostomy) and PEJ (percutaneous endoscopic jejunostomy)  - using the PEG for draining her stomach, and PEJ for medications and feeds. After additional weight loss, Stephanie was diagnosed with intestinal failure and malabsorption and began on total parenteral nutrition (TPN) is a method of feeding that bypasses the gastrointestinal tract - where she is now fed through a Hickman line in her chest. Despite facing significant medical challenges, Stephanie wants to show others that it is possible to live a vibrant, happy and fulfilled life even if you experience a lot of setbacks. Stephanie believes in the strength of community, and increasing representation of mobility aids and feeding tubes in media. She is now determined to use her lived experience to change perceptions and systems to make them more accommodating and aware of people with disability, feeding tubes and who require mobility aids.

ACHIEVEMENTS

  • Completing vocational studies in Nursing (2014)

  • Featured in national media

  • Community member and social media takeovers for Cancer Chicks Australia

LINKS