Have you ever been told by a doctor that the cause of your symptoms could not be determined? Or worse yet, have you ever been told that your condition was “all in your head?”
That was the dilemma facing Beth Nguyen.
Beth is a 38 year old mother of two who, at the age of 33, began to suffer from debilitating headaches which were accompanied by nausea, dizziness, slurred speech, blurry vision, and moderate to severe pain in neck, back and shoulders. As a Registered Nurse, Beth recognized that something was seriously wrong. Naturally she sought help from the medical profession, but none of the many doctors she visited could tell her what was causing these symptoms. One doctor even had the audacity to tell her that her problems were all in her head!
Finally, Beth traveled out of state for another opinion to Johns Hopkins Hospital in Baltimore where she was told that she had Syringomyelia, a rare and painful life-threatening spinal cord disease that damages a portion of the spinal cord from its center and expands outward. Beth’s Syringomyelia is thought to be familial as there were other cases identified in her family. Her brother was born with Arnold Chiari Malformation type I; a herniation of brain tissue into the spinal canal. Chiari malformation type I is found with Syringomyelia in many cases and according to the National Institute of Health there are an estimated 500,000 cases of Chiari in the United States alone.
Syringomyelia can effect men, women, children, and even dogs.
Because Syringomyelia and Chiari malformation remain poorly understood across all medical specialties, and early detection is so difficult, Beth began a crusade that would help bring awareness to the disease and deliver updated education to all specialties in medicine. In 2014 she founded a nonprofit organization (501c3) led by medical professionals called Worldwide Syringomyelia & Chiari Task Force Inc. (WSCTF).
WSCTF’s mission is to “Educate the world about the disease Syringomyelia & Chiari malformation,” and their focus is to “Improve direct medical care across all specialties in medicine to prevent complications and help save lives.”
And if you, or anyone you know, has been diagnosed with this dreadful disease, please join WSCTF. They will advocate for you. (For more information visit their website at WWW.WSTFCURE.ORG).
And now for the FUN(D) part. On Saturday, August 27, from 10am to 2pm, WSCTF will be sponsoring a River Tubing adventure down the Chattahoochee River (please see flyer below). The tubing company $10 River Tubing will donate 100% of the proceeds back to WSCTF to be used for medical education. So please join us for this fun filled day. Thank you!