Growing up, the only thing Sabrina Cannella knew was dance.

At least five days of every week, Sabrina danced competitively. She was in and out of school and when friends asked if she wanted to hang out, her immediate and unequivocal response was always, ‘No, sorry, I have dance.’

You can imagine the devastation when the once healthy and active girl had to acknowledge she could no longer do what she loved most.

“Once I hit puberty, that’s when things started to go downhill a little bit. By Grade 8/9, I started to struggle and by Grade 10, I had to quit dance,” Sabrina says, with a shake of her head. “It was horrible. I was devastated. I left my dance bag out for the longest time because I just couldn’t bring myself to put it away.”

Now 23, Sabrina’s health care journey began at Mackenzie Health about eight years ago when she was diagnosed with several rare, complex auto-immune conditions.

The classic symptoms of appendicitis landed her at Mackenzie Health and then SickKids for surgery to remove the infected appendix.

A few months after that surgery, pain started under her right rib that eventually led to a diagnosis of a liver disease, which caused Sabrina chronic stomach issues from not being able to properly digest food.

She kept dancing.

When she fell down the stairs in 2014 and dislocated her shoulder, things got worse. A surgeon at Mackenzie Health suggested a possible cause for the recurring dislocation of her joints.

A consultation with geneticists at North York General Hospital confirmed what had previously been considered flexibility and “doublejointedness” was actually caused by a rare genetic disorder called Ehlers Danlos Syndrome (EDS) – Type 3 in Sabrina’s case.

After surgery to stabilize her shoulder, an infection in her right arm resulted in a further diagnosis of a nerve condition called Complex Regional Pain Syndrome or CRPS, which, according to Sabrina, is the most painful disease currently known to science.

It was the CRPS diagnosis that finally ended her dancing.

“I kept up with dance and the hope was I would be cured. I remember I still had IV bandages on and I was sitting in class trying to take notes and that was upsetting me because it made me realize how far behind I was,”

Sabrina recalls. “Then, I had missed two tap classes and I was watching [my team], watching their feet as they were dancing, and I realized how much I had missed. I ended up running to the bathroom and throwing up because I was so upset. I remember just sitting at the front door [of the studio] and crying my eyes out because it was at that point I realized I had to let it go.”

Sabrina credits her family and friends as being her biggest source of strength and inspiration in “letting it go”.

“I’m surrounded by the most wonderful people. They lift me up. They constantly give me inspiration and reasons to keep going,” Sabrina says. “If we reach a hard stop, they’ve never looked at it as ‘that’s it, we’re done’. I would not be who I am or where I am without them.”

Sabrina also credits Mackenzie Health, particularly her mental health team, with giving her a sense of normalcy and security knowing she doesn’t have to go far from home to get the treatment she needs.

“When I’m in a pain flare or have an allergic reaction, Mackenzie Health is my go-to,” Sabrina says. “With my conditions, going out of my house scares me, so knowing that Mackenzie Health is nearby, has my history and will know what to do to help me is a huge relief. I don’t feel the isolation that I would having to go to a downtown hospital. My friends and family can visit and provide their support.”

Sabrina recognizes her illness and all the accompanying experiences have taken her on an unexpected path; one that has led her to a surprising discovery – she wants to be a nurse.

A pediatric oncology nurse, to be specific – something that would never have crossed her mind, if it weren’t for her illness.

Convinced her whole experience has been a blessing of sorts, Sabrina considers the opportunity to speak out and tell her story is very important in helping others not to feel alone.

“I don’t want anyone to Google the name of one of these conditions and feel like there’s not enough resources or that they aren’t ‘helpable’,” Sabrina says.

With her family firmly by her side, Sabrina and her health care team work to find the right mixture and balance of treatment to put her in a stable place, leaving Sabrina encouraged that she can live a normal life.

“My conditions can be progressive but it’s a matter of finding what works for me and building off what we know works. Over the past year, we’ve done something right. We have found something that gives me a level of relief that is working.”

Looking forward to getting back to driving and having a social life, Sabrina’s sights are set on starting her post-secondary education next year, and in four or five years, working in the field.

In the short term, the young woman who still struggles to give herself the grace to accept where she is – knowing that she will get to where she needs to be one day – has already started to give back through advocacy and raising funds and awareness for people suffering with the realities of chronic illness.

Sabrina runs a small non-profit fund (non-registered) that raises money to provide comfort items to kids and families, to pay for parking passes and food during treatment and to send chronically ill kids to camp or on shopping sprees.

Using her hashtag #stronglikesab, Sabrina features a specific child and their family on her blog and social media channels and supporters can donate through her GoFundMe page.

As a contributor to The Mighty, Sabrina shares her experiences in an online community that publishes “real stories by real people facing real challenges”. She was a speaker during CRPS Awareness Month last year and says, “Once I started speaking out, it was amazing the response I got.”

Which is exactly why she feels making her voice heard is so important.

Sabrina’s steps are no longer controlled by a 1-2-3 tempo. Instead, she has found a new mantra that helps keep her motivated and hopeful.

She recalls one of her friends telling her, “Every day may not be good, but there’s something good in every day. That’s become one of my favourite sayings and I’m always able to find that.”

Visit Mackenzie Health on YouTube to view Sabrina’s story.

– Erika Vilmanis

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