An Orillia woman is on a mission to spread awareness for people fighting syringomyelia.
Alicia McLeod, 28, says spreading awareness of the condition is crucial.
“I once had to call 911,” she said. “The paramedic had no idea what my condition even was, and that was quite scary.”
Syringomyelia is the development of a fluid-filled cyst within the spinal cord. The disease can lead to serious complications and can damage nerves in the spinal cord.
“It definitely impacts my quality of life,” McLeod said. “At the same time, it’s taught me to appreciate the joys that life brings because some day I could become paralyzed from this condition.”
She said having to explain the definition of syringomyelia to medical professionals has caused her extreme anxiety. It is what has set her on a mission to raise awareness for people like herself who could need to have emergency surgery at any moment.
“It’s important that the paramedics know what this condition is,” she said. “Every second is very valuable when you have a condition like this.”
Since being diagnosed with syringomyelia in her early 20s, McLeod has spent her free time going on adventures and helping with local charity organizations. She is a board member and a rare-disease advocate for the Carion Fenn Foundation. McLeod’s job is to help people with syringomyelia and Chiari malformation.
“Through helping others, I heal myself,” she said. “It allows me to use my own personal struggle to help others who may not know where to turn or what resource to go to.”
McLeod has partnered with various mayors and municipalities across Canada to have landmarks lit up in blue for parts of Syringomyelia Awareness Month. One of those landmarks is the CN Tower. While Orillia doesn’t have a light landmark, the proclamation from Clarke’s office is still meaningful for McLeod.
“I’m so grateful,” she said. “Sometimes I have to pinch myself to see if this is really real.”
Next week, McLeod will give back to front-line health workers by writing them notes of encouragement during National Nurses Week.
“Nurses are the first people I see when I go into any hospital, clinic or my family doctor’s office,” she said. “Sometimes nurses have to see me in a very emotional state before the doctor sees me. Nurses are so compassionate, so kind, and they have done so much for the world over the last two years.”
In her notes of encouragement, McLeod will educate nurses on her condition and ask them to advocate for more awareness.
“I hope they will go do their own research when they go home,” she said. “I’m making sure that I create a big wave of positivity with my awareness month and National Nurses Week.”
For anyone who wants to help McLeod spread awareness, she encourages them to learn more about syringomyelia, wear blue throughout the month of May, and donate to the Carion Fenn Foundation.
