10 August 2018, By Mater Lotteries
Kelsie’s story – Helping young adults with chronic illness
5 min read
Kelsie was just 17 years old when she was diagnosed with a chronic autoimmune disease which affects her white blood cells, causing them to overproduce and attack her body. The illness causes internal bleeding, immune system issues and failure of the digestive system, with Kelsie’s bowel being her worst affected organ.
Following her diagnosis Kelsie spent two and a half years in and out of hospital where she was prescribed a range of medications and took part in a series of medical trials to try and fight her illness. Sadly none of the medications worked and she became dangerously ill, at which point Kelsie and her medical team at Mater made the difficult decision to go ahead with life-saving ileostomy surgery. The procedure involved removing Kelsie’s entire bowel and replacing it with an ileostomy bag.
“I broke down and cried when we discussed the operation,” Kelsie explains.
“It was terrifying and I felt so alone. I didn’t know anyone else who had this condition; I was embarrassed and was always trying to hide my illness. I was studying at university and only dreamed of having a normal life like so many around me.”
“It was also really hard for my parents to see me so sick. My little brother Jake died from a rare genetic condition when he was just two years old. During my surgery I stopped breathing and I was in the same building where we had lost Jake. It was extremely confronting for my family,” Kelsie says.
At the time she was diagnosed, Kelsie was considered a young woman; no longer a child, but also not yet a legal adult. Kelsie attended most of her appointments alone, working with doctors and medical specialists to determine the best treatment plan for her illness. She began attending appointments at the newly opened Mater Young Adult Health Centre in Brisbane, a unique service specially designed to address the needs of young adults with chronic illness.
Established in 2015, Mater’s Young Adult Health Centre provides young people aged 16 to 25 with personalised clinical care and a range of programs designed to address the unique physical, emotional, social and developmental needs of young adults living with a chronic illness. The highly specialised centre caters for young patients with chronic diseases including diabetes, inflammatory bowel disease and cystic fibrosis. It’s the first of its kind in Queensland and one of only a few young adult health centres in Australia.
“I honestly don’t know how I would have survived if it weren’t for the doctors and specialists at Mater’s Young Adult Health Centre.”
“The centre enabled me to bridge the divide between the adult’s hospital and the stage of life that I was at. The space is very inviting; everything from the wallpaper and the furniture, to interactive spaces where you can study or meet other young people—but really it comes down to expertise. Someone who understands how to communicate with you as a young person is going to treat you better,” Kelsie said.
Thankfully, Kelsie’s ileostomy surgery was a success and she began the long road to recovery. After undergoing an additional four surgeries, including a reconstructive procedure in which her ileostomy was removed, Kelsie was able to fulfill her dream of travelling the world.
“Just before my surgery I was in so much pain that I was honestly prepared to die. I was an 18 year old girl with a funeral plan in place. I can’t believe how good my life is now. Not a day goes by where I don’t think to myself ‘oh my goodness – I’m catching the train, I’m walking, I’m breathing, I’m living a normal life!”
Kelsie is now living and working full time in the heart of Brisbane, with dreams to take her career internationally.
Kelsie still attends weekly appointments at Mater’s Young Adult Health Centre in Brisbane, where she sees a physiotherapist, occupational therapist, surgical specialist, psychologist, art therapist, dermatologist and specialist dietician, who help her to manage the symptoms of her illness.
“Everyone in my healthcare team is specialised in treating young adults, which is fantastic,” Kelsie says.
Kelsie is also taking part in a number of research studies at Mater and is a member of the centre’s Young Board of Creative Directors, which provides consultancy on the best way to expand and refine the young adult’s health service.
“I’m participating in a research study led by Mater’s Dr Jake Begun, which involves using ultrasounds to provide doctors with real-time assessments of a patient’s disease activity,” Kelsie explains.
“Now when I see my gastroenterologist he scans my abdomen using an ultrasound machine, right then and there in his office. It means he has something to compare my results to if I turn up in the emergency room.”
Dr Begun’s research is also focussed on analysing the effectiveness of e-health tools in the young adult population.
“My occupational therapist often sees me via telehealth, which is like Skyping your doctor,” Kelsie says.
“It’s great because when I’m feeling really unwell I can’t always drive and get myself to appointments, so being able to see my doctor online and still receive invaluable care means the
Despite the many health challenges that she has faced, Kelsie is unfailingly positive when she talks about her time spent in Mater’s Young Adult Health Centre.
“Am I happy with the service? 110 billion million trillion percent,” she says.
“The centre at Mater gave me something to live for. There’s inspiration there, creativity and positivity—it’s what life is all about. I can 100% say that if it weren’t for Mater’s young adult doctors and specialists, I wouldn’t have had the capacity to deal with what happened to me.”
As for her plans for the future, Kelsie hopes to spend her life helping others.
“My Dad Ross is my hero, and he taught me that happiness is something you subconsciously earn by giving it to others. I hope to live my life the way he lived his; full of courage, adventure and always with a helping hand for others.”