Let’s Talk Lupus: Conversations with Macenzie| Isabella C.

Let’s Talk Lupus with Macenzie

My Lupus Story with Isabella C.

Isabella Collazos remembers staring out her window while stuck in her uncomfortable hospital and seeing her university peers celebrate homecoming in the street. “I was thinking, why me? Why am I stuck here? Why are they having all the fun?” Only a teenager, Isabella was too sick to keep up with life. Her world stopped while everyone else kept on moving. She was fighting stage five kidney disease and high levels of liver toxicity due to complications of lupus.

Isabella was born in Cali, Columbia and moved to London, Ont., with her family when she was five. Growing up, Isabella dedicated her life to volleyball as a competitive player. “Volleyball was everything. It was my life,” she says. “I felt it was really going to happen for me.” In her last year of high school, Isabella started to experience joint pain in her shoulders and hands. She recalls looking back at this time and “thinking nothing of it,” as it was common for an athlete to experience pain from time to time. However, things significantly worsened after a trip to Florida with friends. “I would wake up every day in intense pain.” Isabella also had a strange rash-like sunburn on her face. When she returned home, the ‘sunburn’ (Butterfly Rash) and joint pain never subsided. This is when she decided it was time to see a doctor. Due to her being a competitive volleyball player, Isabella was referred to Fowler Kenney, a sports medicine clinic at Western University. Dr. Darryl Putzer immediately recognized something was not typical with Isabella’s condition. He suggested that Isabella may have lupus. “I didn’t know what it was. I looked at him like he had five eyes.” Isabella agreed to get blood work done to confirm Dr. Putzer’s concerns, although she and her family believed the diagnosis was unlikely. “I just thought there was no possible way. I’m so young, that is crazy.” The blood tests came back proving Dr. Putzer’s suspensions to be true. And a few days after her 18th birthday, Isabella was diagnosed with lupus. “I was in denial,” says Isabella.“I’m a pretty ‘Type A’ person and very organized. I had all these set goals and dreams and it was all going out the window.”

Everything as Isabella knew it changed. “My life turned completely upside down.” The tail end of Isabella’s high school year is not something she looks back on fondly. “It was quite miserable.” 

Dr. Putzer referred Isabella to a rheumatology clinic in London, to be treated by Dr. Sara Haig. “I felt guilty for not being able to hang out with my friends. I didn’t want to go to prom, it was a dreaded time for me,” she says. “I didn’t feel like myself.”

As dark as this time was for Isabella, there was a silver lining. From her initial diagnosis to treatment, there was a very short turnaround time. This meant her intense lupus symptoms began to subside by the fall and she was able to attend her first year of university with minimal compilations. However, she could no longer attend university across Canada as initially hoped. She enrolled at Western University, as it was the closest option to home. “I always dreamed about going away for school. But it felt right to stay with my family.” Dr. Haig was another reason Isabella decided to stay home. “She is my cheerleader and has been a huge part of my journey and faith.”

Western University provided Isabella with accommodations for her illness, but she struggled to accept her situation for what it was. “For me, I saw it as a weakness,” she says. “My accommodation counsellor knew more about the disease than I did.” For months, Isabella continued her life as if she did not have the disease. “I had a very stereotypical idea of what a disability was… I didn’t tell anybody I have lupus.”

Throughout her first year. Isabella had a difficult time keeping up with her friends who were partying and drinking frequently. Due to her medications, she couldn’t drink alcohol – and it was difficult for her to participate in typical university fun. Although Isabella’s friend group eventually became smaller, it in turn became more tight-knit and secure. By the second year, Isabella’s life started to stabilize and she had a routine that appeared to be working. Plus, her lupus seemed to be under control. Despite her best efforts, things took a turn for the worse during her third year of university. Isabella was under an incredible amount of stress due to the hardships she and her family were experiencing. “Suddenly, that lupus I hadn’t seen in years presented itself.” Isabella had a combination of ulcers, rashes, fevers, joint pain and fatigue. She was being treated in and out of the hospital with a cocktail of drugs. None of the medications Isabella was on were working and one even caused a severe allergic reaction. “This is when I started to use my accommodations,” says Isabella. “I recognized they weren’t weaknesses but a strength.” The periods in the hospital taught Isabella that it was okay to ask for help and to have tough days. “I started listening to my body more. I’ve learned to take everything day by day.” From 2021 to 2023, Isabella continued to experience significant health issues.

But most of all, Isabella knows she couldn’t do it without the support of her mother, Paula. “My mom’s unwavering faith and love has been my everything and she’s been there with me through it all,” says Isabella. “She fought to advocate for me.”

In June 2024, she graduated from Western University with a degree in disability studies and a minor in psychology. Today, she is continuing her education at Western to become a teacher. “I want to be an advocate for my students. I want to be that teacher who accommodates everyone. You don’t know what somebody is going through behind closed doors.” Isabella has been in remission for a year and her liver and kidneys are stable. And for the first time in a long time, Isabella feels she has a semblance of her life. “I’ve learned to be resilient and persistent…and strong,” she says. “I hope to teach those values to my students one day.”