I'm a Nurse With Syringomyelia Determined to Make a Difference

My name is Beth, and I am 38 years old. I have a disease rarely recognized in medicine today even though it was first discovered over 200 years ago. My disease is called syringomyelia (SM). SM causes cysts to form inside the spinal cord, and this process, once it begins, has no cure. SM damages the spinal cord and the spinal nerves. It can lead to widespread symptoms, including moderate to severe pain and paralysis. I also have intracranial hypertension, heart failure, pulmonary hypertension and POTS. I am on oxygen all the time, and I use a wheelchair for long distances.

When I first developed symptoms of this disease, I was working full-time in a busy emergency room. My early symptoms included headaches and upper back and neck pain. After attending numerous appointments in which lab work came back normal, I was told I must be stressed out and to reduce my work hours. My symptoms were dismissed. I was highly regarded in the hospital where I worked by my peers and physician colleagues. But that didn’t help me when I developed a rare disease. The worst part was I had to travel out of state to finally find out my diagnosis. I felt defeated when I learned there were no specialists in my state that treated my disease, and worse still, it remained largely unheard of in the medical community.

By the time I had a correct diagnosis, I had unfortunately developed permanent damage. I decided to turn my anger into determination and use what happened to me to help spearhead progress with regard to my disease and advocate for others. With the work I am doing now, thousands with this disease are receiving support, and I believe there is meaning to what I have gone through; it has not been for nothing.

My feelings of hopelessness quickly turned into determination. I realized that as a
registered nurse, I can change the way people are treated with this disease in medicine by using my case as a prime example of why we deserve better care. Amazing research has taken place that has paved the path for new opportunities with this disease, and yet I believe the majority of medical professionals still have never heard of it. How do we address the disparities in the medical community? I believe it takes a medical professional with the disease to command attention from the medical community to address the problem areas.

I founded Worldwide Syringomyelia & Chiari Task Force in 2014 to do just that. We are the first organization in the United States led by nurses and physicians to stand behind SM as a disease. This disease causes widespread physical symptoms and pain as it damages the spinal nerves and spinal cord. We understand enough about this disease to begin working on solutions. Through online support groups, I discovered I am not alone. Many like me also developed similar complications that are not widely publicized. This is what we are changing. We also advocate for those
who have Chiari malformation, which can be associated with SM. We are strong advocates, and we are offering solutions to address the problems directly involving the medical community.

Why did I decide to do this and take on such a huge project in the midst of my own health challenges? First, I am a mother of two beautiful children who need to know their mom is fighting for better medical care for everyone with SM and Chiari as well as other rare diseases. I am also a wife to a loving husband who has traveled this difficult road with me and never leaves my side. In regards to others like me, it’s simple: to prevent others from developing complications and help them. We are proud to lead the way!