MY ILLNESS DOES NOT DEFINE ME

Zahra Alidina, 19 Richmond Hill, ON

I used to be an avid soccer player; there was nothing I loved more than the smell of fresh grass and the feeling of the ball on my feet. Soccer was my passion. I started playing when I was five years old. But when I was nine, I started having severe knee dislocations.

At first, I thought I’d let my leg heal and then I might be able to go back to playing sports. I started to play a bit of badminton instead — it was a bit more stationary. But my knee continued to get worse and worse. Then I was told it was probably best that some sports were just off the table because the risk of damage was increasing with my injuries.

My surgeon wanted to see if we could do an intensive physiotherapy program to help my knee, and when that wasn’t really working, he decided it would be best to operate. When I was 12, I underwent knee surgery, which was a huge success. It was so exciting to be starting high school and be able to participate in gym class again. However, one day I fell and severely dislocated my other knee. I went back to my surgeon, and we decided to do the same surgery on the second knee. I turned 16 in the hospital and the staff were absolutely amazing in helping me celebrate my birthday — they even made sure I got some chocolate cake.

In 2018, I was referred to the Ehlers-Danlos Syndrome (EDS) Clinic at SickKids, where I was diagnosed with this condition. EDS is a group of hereditary disorders involving connective tissue that affects the body in various ways. Connective tissue is like the glue that holds your body together, except my glue is really stretchy and weak.

The EDS Clinic at SickKids is one of a kind. Its interdisciplinary team helps patients deal with complications from the condition. Although there is no cure for EDS, SickKids has helped. Through the fun physiotherapy, deep conversations with staff in psychology, and help from doctors, the EDS Clinic has changed my life.

The EDS team cared about me as a person and my ambitions. They made sure to help me at school because I had to take time off. I worked with a social worker, who wrote a letter to my school for all my teachers. It was an accommodations plan, which included flexibility with deadlines, frequent breaks, access to a quiet space at school, and the use of an elevator instead of stairs. Without this plan, attending school in person would have been more difficult. Today, I’m in my second year of studying kinesiology at McMaster University. I would love to go into med school after my undergrad, and I definitely want to go into paediatric medicine. I have always wanted to go into medicine. Being a patient at SickKids solidified that passion.

Biking is something I definitely enjoy, and I also started playing table tennis. It’s something that strengthens my shoulders and my arms in a different way, and makes physio fun.

SickKids staff have taught me my illness does not define me. What does is my attitude and how I approach things in life. And for that, I could not be more grateful. The impact the staff has had on me just makes me want to go into medicine more and help other kids like me.

“I would love to go into med school after my undergrad, and I definitely want to go into paediatric medicine.”

Torstar, the Star’s parent company, is in a fundraising and educational partnership with The Hospital for Sick Children to help raise $1.5 billion for new facilities.

Zahra, here with her mom, was diagnosed with Ehlers-Danlos Syndrome, a group of disorders affecting the skin, joints, and blood vessels.

At age nine, Zahra was recovering from a knee dislocation that would eventually prompt a search for a bigger diagnosis. She would go on to endure multiple knee surgeries before a team at SickKids diagnosed her with a rare condition.

Today, Zahra is a student at McMaster University, and has plans to go on to medical school.