Shelby C.

In 2022, Shelby Chan, who had just turned 17, was diagnosed with biopsy confirmed Nephrotic Syndrome Minimal Change Disease. This was not her first experience navigating the complexity of serious health conditions. Since her early childhood, she has been battling for a rare autoimmune disease known as Henoch-Schönlein Purpura, as well as Juvenile Idiopathic Arthritis. Regardless, Shelby’s journey with chronic illnesses remained manageable until her diagnosis with Nephrotic Syndrome, which has immensely impacted her quality of life and well- being. 

The onset of her disease started with an alarming escalation of symptoms to a series of medical complications that led to her frequent hospitalization for nearly a year. On the morning of her 17th birthday, Shelby woke up with a severely swollen body which affected her ability to open her eyes and breathe properly. Overwhelmed by the inexplicable low urine output and repetitive vomiting, she was rushed to the children’s hospital which later revealed the decreased level of her kidney function and the excessive protein spilling in urine. Within the first 2 months of admission, the only course of treatment was to place Shelby on high dose steroids and another immunosuppressive medication. However, without a potential cure for Nephrotic Syndrome, Shelby’s body remained unresponsive to treatment, leading to her decision in pursuing her last treatment option- immunotherapy with the use of rituximab and MMF. 

Surprisingly, Shelby only had 4 kidney relapses after her initial diagnosis and her symptoms became more manageable over time. But just as she began to regain some stability, another new diagnosis has taken a turning point in her life. Over the course of treatment, Shelby has been experiencing intense full body pain, leaving her reliant on a wheelchair for the past year. Despite months of seeking answers, she and her family have faced numerous medical gaslighting and misdiagnosis that further debilitated her conditions. It wasn’t until later in 2023, she was finally given a diagnosis with an MRI confirmed of Avascular Necrosis due to high exposure to steroids. 

“Dealing with an inevitable chronic pain is like a mixture of physical exhaustion and mental drain cause every hour, every minute and every second, I’m experiencing the same type of sharp, stabbing pain. But this– doesn’t define me. Letting my illness take away my quality of life is not who I really am.” She said. Despite the countless obstacles she faced in regaining her strength back, it took nearly 2 years of intense rehabilitation and a shift of mindset to be able to walk again. “Sometimes, giving up seems like the easiest option but the power of perseverance pushed me forward and reminded me that the journey to recovery is not meant to be easy. Achieving remission and being able to walk again are not only a true blessing, but a testament that hope and determination are essential values to carry through life.” 

Shelby’s journey has broadened her perspective as she learnt to cherish the moment she has. Yet, this comes along with the idea of finding happiness and joy in the present while ensuring every moment is lived with purpose and fulfillment. Now turning 20, Shelby is studying at the University of Toronto, aiming to pursue healthcare in the future. With the goal of giving back to the community, Shelby has been actively involved in patient advocacy while also working in a nephrology research lab at the children hospital, alongside the team of doctors who once treated her. In addition to her role of being a Nephcure Champion, Shelby is hoping to raise awareness for rare kidney disease and bring forth towards promoting health wellness and patient rights in a worldwide spectrum.