Chloé

Creating meaning from tough times – a Manitoba woman diagnosed with a chronic condition in childhood is now using her experience to help others.

“I am excited to bring my perspective as a patient, which I think is something that’s very important and something that is unique.”

When Chloé Janse van Rensburg was five years old, she was diagnosed with juvenile idiopathic arthritis (JIA), an autoimmune condition that causes persistent joint pain and inflammation.

A gymnastics coach had noticed Chloé’s left wrist had limited mobility, but she had hypermobility in her fingers. Her parents took her to see local medical teams close to home in Brandon, Manitoba, who referred her to HSC Children’s Hospital in Winnipeg.

After many tests at HSC Children’s, including MRIs, Chloé was diagnosed and started receiving joint injections to treat her condition. Her family needed to drive two and a half hours from Brandon to Winnipeg every few months for continued specialized care until age nine, when she became asymptomatic except for a lack of mobility in her wrist.

“I remember being kind of nervous because it’s a huge hospital in a huge city,” says Chloé.

“Then I remember feeling so safe and welcomed in Children’s Hospital. I have nothing but good memories there – as soon as I was in that waiting room, I was at ease.”

Chloé had another flare up of JIA in her teenage years, this time with pain in her feet, a buildup of fluid and swollen tissue called an oedema and even less mobility in her wrist. This required chemotherapy, another joint injection and immunosuppressants. She continued treatment with HSC Children’s until she turned 18 and says so far, with monitoring and medication, the arthritis hasn’t spread.

Throughout her childhood, Chloé also used her experience to help others by participating in clinical studies to help researchers at Children’s Hospital Research Institute of Manitoba (CHRIM) learn more about JIA. These experiences led her to an interest in medical sciences. As an adult, after completing an undergraduate degree in microbiology, she then became a research assistant at CHRIM and joined CHRIM’s Research Advisory Council for Youth (RACY).

“The whole concept of research advisory councils is having patients or parents of children with diseases to be on research teams as partners,” says Chloé. “They’re helping with the research because when you have the disease, you’re going to know what is important. The opportunities are endless as a researcher, as a participant, as a parent of a child with a chronic condition and as someone with a chronic condition.”

Chloé’s passion for research, medicine and helping others continues to inspire her career, and she will start medical school at the University of Manitoba in August of 2024. She says rheumatology as a specialty is on her radar, but she’s also keeping an open mind.

“I’m excited to bring my experience, to take away medical information and to learn what it is to be a doctor. Everyone has gone to the doctor, but I think having a chronic condition gives a different outlook.”

Donors can support life-changing research at CHRIM for families like Chloé’s.