Nurse’s Diagnosis Inspires Launch of Non-Profit Benefiting Rare Spinal Disease

April 2, 2015 - PRLog -- Beth Nguyen RN and CEO has spent over 15 years treating transplant, medical, surgical, and emergency/critical care patients. Despite her medical proxy, Nguyen’s personal ailments were misdiagnosed for over a decade. After misdiagnoses, such as Multiple Sclerosis (MS) and possible ALS, Nguyen’s “not feeling right” was diagnosed as a rare disease called Syringomyelia (http://www.mayoclinic.org/diseases-conditions/syringomyelia/basics/definition/con-20034245), in which a fluid filled syrinx forms in the spinal cord.

Since her diagnosis, Beth discovered that many physicians don’t know how to spell Syringomyelia, let alone diagnose it. The danger is that every misdiagnosed individual risks irreversible damage. Likewise, there is no medical treatment protocol or uniform care plan available for people diagnosed with the rare disease.

The National Institute of Neurological Disorders and Stroke estimates that Syringomyelia affects 40,000 people in the United States, and that symptoms usually onset in young adulthood. Recognizing a larger need, Nguyen launched Worldwide Syringomyelia & Chiari Task Force Inc. to educate medical professionals around the world about Syringomyelia and unify medical specialties with collaborative care.
Research has already yielded promising results. “We are tackling the problem in humans and in all breeds of canines as well because there has been progress in veterinary medicine for Syringomyelia that is important to consider. You don’t really know what to expect because so few doctors in all specialties understand what it is or how to provide ongoing care for the person who has it…it affects the body head to toe,”said Nguyen. “My Syringomyelia led to intracranial hypertension, heart failure, pulmonary hypertension, and POTS dysautonomia.”

Syringomyelia damages the spinal cord and often leads to progressive weakness in the arms and legs, stiffness in the back, shoulders, arms, or legs and chronic pain. Other symptoms may include headaches, lost sensitivity of extremes of hot or cold (especially in the hands) and loss of bladder and other functions. Symptom combinations vary depending on where in the spinal cord the syrinx forms and how far it extends. Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining.

“Our organization is focused on providing direct resources to men, women, children, and canines with Syringomyelia. We want members of the press to help us bring this disease into as many public platforms as possible. The more we can push for attention, the more we can educate doctors and patients, continuing our effort for a protocol,” finished Nguyen.

The Worldwide Syringomyelia & Chiari Task Force (http://wstfcure.org/) has a main website and social media accounts that currently provide information and resources for both patients and physicians. The organization will soon host live events, via its U-Stream channel, to further its education efforts worldwide.

MEDIA CONTACT:
Beth Nguyen, CEO of The Worldwide Syringomyelia & Chiari Task Force
wstfcure@wstfcure.org
http://wstfcure.org/

OR

Helene Vece, Media Director of The Worldwide Syringomyelia & Chiari Task Force
office@HeleneVece.com