DEMAND A MEDICAL TREATMENT PROTOCOL FOR SYRINGOMYELIA; A LIFE ALTERING DISEASE!

Worldwide Syringomyelia & Chiari Task Force is a non-profit 501c3 organization with a mission to educate the world about Syringomyelia.  We are advocating for the rights of children, adults, and canines of all breeds who have a diagnosis of Syringomyelia.   Syringomyelia is a disease that could develop from numerous causes: Chiari I malformation, Spinal Tumors, Genetics,  Spina Bifida, Hemorrhage, Arachnoiditis, Meningitis, Myelomeningocele, Spinal Cord Injury such as Trauma from a  motor vehicle accident are all examples of how it may start.  Syringomyelia; once identified regardless of cause is a disease in which a cyst or many cysts form within the spinal cord.  Cysts; large and small can destroy nerves and fibers and damage the spinal cord.  The irreversible spinal cord & nerve damage causes different symptoms depending on the part of the  spinal cord that is damaged.  Even if the cause can be corrected surgically symptoms may remain due to spinal nerve/cord damage.  Please sign our petition to further our cause.

First, we are advocating for a medical treatment protocol for all children, adults, and canines with Syringomyelia so that they can receive better medical care across all states and throughout the world. Humans and canines alike die from complications of this disease every year!  Their deaths are in many cases preventable!  Careful medical management must include care starting with the Primary Care physician and includes the following specialties:  Neurosurgery, Neurology, Neuro-ophthalmology, Cardiology,Pulmonology,  Orthopaedics, Gastroenterology, Urology, OB-Gyn, Endocrinology, Pain Management, Psychology, and Physical Therapy. Our organization launched the first Model of Care!  http://www.wstfcure.org/model-of-care.html  Help us spread the word! Syringomyelia can cause spinal cord injury which affects all organs and nerves throughout the body. Currently there is no uniform treatment protocol for children or adults with this disease so it remains poorly understood even though the first documented case of Syringomyelia was reported in 1803!! Individuals who have this disease continue to suffer daily without a treatment plan and in many cases many do not have physicians who even know what this disease is resulting in poor outcomes.  Change is inevitable and necessary to help all those suffering with Syringomyelia!! Collaboration and continuity in medicine is crucial in the treatment and management of this disease!

Second, we are advocating that the definition of Syringomyelia is changed universally from a rare disorder to disease. Our organization is the first one in the United States led by nurses and physicians to stand behind Syringomyelia as a disease!  A united effort will get us much needed help in medicine!  A disease is by definition any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs whose etiology, pathology, and prognosis may be known or unknown. Syringomyelia meets this definition on all accounts! Medical research has proven that Syringomyelia can be a progressive disease.  This means that if no medical intervention is started at an early phase then irreversible damage occurs resulting in costly procedures, hospitalizations, organ damage, severe disability, paralysis, and even death!  It is vital that ALL specialties in the medical community recognize this disease to start early intervention by initiating a treatment plan early in order to prevent life altering complications!! There is currently no cure for Syringomyelia but we will continue to fight for a cure!  Please sign this petition to advocate for all who suffer from Syringomyelia and to promote change within the medical community!