Shelby C.

My name is Shelby Chan. I was diagnosed with Nephrotic Syndrome with biopsy confirmed of Minimal Change Disease in June 2022. Prior to having a kidney disease, I had a history of a rare disease called Henoch Schonlein Purpura and juvenile idiopathic arthritis in my early childhood. Battling with multiple diseases was definitely quite a journey; however, life back then was still considerably manageable. Until my diagnosis with Nephrotic Syndrome, that was when my health had taken a great toll in my life.

On my 17th birthday, I woke up feeling as if my whole body was severely swollen to the point I couldn’t open my eyes, I could hardly breathe, and my stomach was severely bloated. I rushed to the ER and was tested with a high protein (+8000) count in urine and albumin in blood dropped to 15. I was hospitalized for 2 months as my symptoms were progressed and my body also didn’t respond well to iv and oral steroids. I was given the second line of medication called Tacrolimus which partially put me into remission but had given me a side effect of calcineurin- inhibitor induced pain syndrome. During my admission, I recalled having intense pain in bilateral hips and shins with an undiagnosed cause. The idea of possible side effect from Tacrolimus was proposed and my shin pain was resolved after switching to the third and fourth line of medications- Rituximab and Cellcept.

Since then, I had 3 relapses with Nephrotic Syndrome occuring in January 2023, July 2023 and November 2023. Each relapse came with symptoms such as headache, stomach pain, swollen body/face and significant pitting edema. Though my symptoms with Nephrotic Syndrome were substantially treated during my admission, a MRI later confirmed a diagnosis of Avascular Necrosis (AVN) in my bilateral hips, femurs and knees due to the high exposure to steroids…

This would explain the intense pain in my hips that left me relying on a wheelchair on a daily basis. Dealing with inevitable chronic pain was like a mixture of physical exhaustion and mental drain, as every hour, every minute and every second, I’m experiencing the same type of intensifying pain. In fact, with the addition of having a rare kidney disease with minimal options to treat the symptoms- I would say it has been such a long journey, and not to mention, an incredibly difficult one.

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. Despite it all, I have made a promise to myself to never give up and will continue to try my hardest no matter how painful and stressful the process will be. Because of that, not only am I able to graduate high school as an honour roll receipt with 2 subject awards , I am also gradually able to stand and walk. With the positive results I’ve seen from altering my mindset, I became a chronic illness advocate who inspires and motivates others to overcome barriers by sharing personal experiences on social media and in school. Through NephCure, I’m hoping to raise awareness of the rare kidney disease we’re living with and promote health, wellness and patient rights on a worldwide spectrum.

Shelby Chan, 19
Minimal Change Disease
Markham, Ontario, Canada
(near Toronto)