Erica | Toronto, ON
“For a few years, I could feel that something wasn’t right with my body. My heart often raced and I had migraines, dizziness, and blurred vision. But I was in the throes of pregnancy and post-partum, and doctors told me not to worry.
Still, my inner voice told me that something was wrong. In July 2020, my husband and I went to a resort in Muskoka with our three girls to celebrate getting through the first wave of COVID. We had an awesome weekend – fishing, Sea-Dooing, and letting the girls stay up past their bedtimes. A few days later, though, I suddenly started to feel awful. I was exhausted and had this terrible head and neck pain that wouldn’t let up. Finally, one day I waited until my kids were in bed, nursed my newborn, and then went to the ER. I walked in expecting for them to find something – and unfortunately, I was right. They quickly discovered that I had a paraganglioma, a rare type of neuroendocrine tumour, at the base of my skull.
“Now, I’m passionate about informing other paraganglioma patients and doctors that this surgery is possible and that the outcomes can be amazing.”
Because this condition is so rare, there’s a lot of misinformation out there. I was shuffled around between different surgeons and specialists, and told that my tumour was inoperable. Fortunately, I finally found a great doctor in the U.S. who specializes in this area and who was confident that he could get the tumour out safely.
My friends and family banded together to create Team Erica. We beaded hundreds of black and white bracelets – symbolizing a zebra, because zebras are rare and are used in the medical community to reference rare diseases – and sent out the bracelets to my community.
I felt so supported by Team Erica. I could really feel their prayers, positive thoughts, love, and light – their collective energy. Leading up to my surgery, I wasn’t scared. Everyone in my community wore their zebra bracelets and rallied around my family while I was away. It was incredible.
My surgery was risky and required two full days in the OR, but it went beautifully. Now, I’m passionate about informing other paraganglioma patients and doctors that this surgery is possible and that the outcomes can be amazing. I feel this great pull to spread awareness and education."