When Alicia McLeod entered her 20s, she began noticing that she was showing a few concerning symptoms. Eventually, Alicia visited the doctors, where she was diagnosed with syringomyelia. According to Midland Today, Alicia was initially shocked by her diagnosis, but has since dived more deeply into advocacy. 

The 28-year-old is passionate about rare disease awareness – particularly because of her own struggles. For example, Alicia once had to call 911 to receive medical attention. But when the paramedics showed up, they had no knowledge of what syringomyelia was. Even when she has spoken to other doctors or emergency workers, Alicia has sometimes had to explain her condition. Part of her desire to raise awareness is so that medical professionals realize how important it is to know about these conditions in case the need for emergency care arises. 

Right now, Alicia’s advocacy focuses on providing resources and education to those with Chiari malformation and syringomyelia, writing supportive letters and notes to healthcare workers (which include information on syringomyelia to help raise further awareness), working with politicians to light up buildings for syringomyelia awareness, and being a Board Member and advocate for the Carion Fenn Foundation, a registered charity. 

To those who are going through something similar, Alicia advocates to embrace hope as much as they can. One day, she says, her condition might worsen – but for now, she is able to pour her heart and soul into something she cares deeply about. She hopes that others are able to use their own zest for life to spur change in their communities and within themselves. 

What is Syringomyelia?

Syringomyelia refers to the development of a fluid-filled cyst – called a syrinx – that forms within the spinal cord. The cyst is filled with cerebrospinal fluid (CSF). It is possible for the cyst to become larger over time. As the cyst grows, it can cause pain, weakness, stiffness, and even spinal cord damage. The exact cause of syringomyelia is unknown, although there are other conditions that can contribute to its development. These include a spinal cord injury or tumor, Chiari malformation, meningitis, or tethered spinal cord syndrome. Symptoms vary based on the size and location of the cyst. However, potential symptoms can include:

• Scoliosis (abnormal spinal curvature)
• Arm, neck, and back pain
• Back, shoulder, arm, and leg stiffness
• Headaches
• Muscle weakness and atrophy
• Loss of reflexes
• Muscle spasms in the legs
• Loss of pain and temperature sensitivity
• Problems with bowel and bladder function
• Heavy sweating