SUPPORT CHANGE IN DIRECT PATIENT CARE FOR SYRINGOMYELIA & CHIARI TO SAVE LIVES!

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Thousands of men, women, and children suffer complications every single day from Syringomyelia and Chiari.  Sadly, these complications can include paralysis and even death!  The reason this keeps happening is because of the absence of guidance in the ongoing management of Syringomyelia and Chiari for primary care physicians and all specialties.  There is a lack of knowledge, dismissiveness of symptoms, and no standard treatment plans for Syringomyelia and Chiari.  Implementation of effective tools in direct patient care with regard to ongoing medical management of Syringomyelia and Chiari across all specialties in medicine would prevent complications and help save the lives of men, women, and children!  Medical professionals of all specialties serve a critical role in the ongoing management of Syringomyelia and Chiari.  We need help from medical professionals to change this trend!   

Thousands of men, women, and children initially present with symptoms that can be dismissed or misdiagnosed.  A thorough history, physical exam, and MRI of the brain and spine are recommended to initally diagnose Syringomyelia and Chiari. Later on, if left untreated the symptoms may worsen developing into complications such as papilledema that can lead to blindness, autonomic dysfunction that can lead to cardiovascular complications and other problems with heart rate, breathing, and temperature regulation,  central and/or obstructive sleep apneas,  paralysis, bowel and bladder complications, and moderate to severe pain just to name a few.  The patients who experience these symptoms daily suffer from lack of validation, lack of resources, and worst of all suffer preventable complications all due to lack of understanding about these diseases among all specialties in medicine!  How do we know this?  We measure it in our patient member groups when complications arise that could have been prevented by early intervention and we measure it in the loss of precious lives within our member groups.  Thousands of men, women, and children attempt to speak up but their pleas have in the past fallen on deaf ears. 

Stand with us to be a voice where there has been none.  Let's bring the problems into the light to bridge the gaps and address the disparities in the medical community!  We are confident we can do this by implementation of standard care plans, treatment guides available for all specialties better defining their role in the management of the patient with Syringomyelia and Chiari, mandatory CME courses in medical facilities, and educational programs that begin in medical and nursing schools!  We are not only patient advocates but we are proactive offering solutions!  Worldwide Syringomyelia & Chiari Task Force is led by a registered nurse with the disease Syringomyelia who understands the disparities in medicine from first-hand experience as a rare disease patient and as a nurse. This organization was started to help address the disparities in direct patient care with regard to Syringomyelia and Chiari.  

For all medical professionals that do provide support for patients with Syringomyelia and Chiari we thank you very much and it is all of you that make a difference in our lives and help save lives!  We need you to encourage your colleagues to learn about the latest updates regarding Syringomyelia and Chiari and we are happy to assist!  For all medical professionals that do not acknowledge Syringomyelia or Chiari as serious please understand that we measure the ineffectiveness of current resources in direct patient care in the preventable complications and deaths of children and adults within our organization!  Change is inevitable to help save lives!   It is true that patients with Syringomyelia and/or Chiari many remain stable for long periods or even display no symptoms.  However, they can progress and once symptoms arise would be caught early with proper ongoing medical management.  NO ONE should have to die!  Syringomyelia and Chiari can cause serious complications...even death!    If you are reading this and think that this situation does not apply to you please remember this could be your mom, brother, aunt, sister, husband, wife, or child.  If this were to happen tomorrow then you would want a better future for them.  Please sign today so that we can move forward together to implement needed positive changes!  

Worldwide Syringomyelia & Chiari Task Force is a non-profit 501c3 organization with a mission to educate the world about Syringomyelia & Chiari.     Syringomyelia is a disease that can develop from numerous causes: Chiari I malformation, Spinal Tumors, Scoliosis, Genetics,  Tethered Cord, 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 damage spinal nerves and fibers and can damage the spinal cord.  If early intervention is not implemented the damage can become irreversible!  Spinal cord and spinal nerve damage can cause widespread physical symptoms and moderate to severe pain.  Even if the cause can be corrected surgically symptoms may remain due to spinal nerve and spinal cord damage.  Syringobulbia is a term used when cysts inside the spinal cord from Syringomyelia affect the brainstem.  Chiari I malformation is present when the bony space of the skull is smaller than normal forcing the cerebellar tonsils down to protrude through the skull and down into the spinal canal blocking the flow of cerebrospinal fluid.

We are asking for more support from all specialties in medicine to collaborate in further development of treatment protocols for all children, and adults  with Syringomyelia & Chiari so that they can receive better medical care across all specialties in medicine all around the world. Men, women, and children suffer from complications of Syringomyelia and Chiari each year and some of them pass away!  Some deaths could have been prevented with better ongoing medical management!  We are accountable to help if we know more can be done.  Excellent ongoing 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, Physical Therapy, and Palliative Care. Primary care and Neurosurgery must be involved in all aspects of care for a patient with Syringomyelia and/or Chiari.  Our organization launched the first Model of Care!  http://www.wstfcure.org/model-of-care.html  Syringomyelia can cause spinal cord  and spinal nerve injury which affects all organs and nerves throughout the body. Currently there is no standard treatment plan for children or adults with Syringomyelia or Chiari so they remain poorly understood by other specialties in medicine even though the first documented case of Syringomyelia was reported in 1803!  Individuals who have Syringomyelia and/or Chiari continue to suffer daily without a treatment plan.  We must implement plans of care and help to further define the important role other specialties have in the management of this disease to improve ongoing care worldwide!  Once patients return home from their specialist there is a BIG problem.  They are unable to find physicians willing to monitor them and this results in higher complication rates and in many cases many do not have physicians in their home state who have ever heard of Syringomyelia and Chiari;  resulting in poor outcomes.  Change is inevitable and necessary to help all those suffering with Syringomyelia and Chiari! Collaboration and continuity of care in medicine is crucial for proper treatment and management of Syringomyelia and Chiari!

We are advocating that the classification of Syringomyelia is changed from a disorder to a 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  & Chiari can be progressive..  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 these diseases to start early intervention by initiating a treatment plan early in order to prevent life altering complications!! There is currently no cure for Syringomyelia or Chiari but we will continue to fight for a cure!  Please sign this petition to advocate for all who suffer from Syringomyelia & Chiari and promote change within the medical community!  

This petition should be signed by medical professionals, public, caregivers, patients, and their families who support positive change and implementation of guidelines with care models across all specialties in medicine with regard to Syringomyelia and Chiari.    Worldwide Syringomyelia & Chiari Task Force is led by medical professionals promoting positive change with regard to direct patient care!  These changes are crucial to decrease time to diagnosis, address unmet needs, eliminate the gaps and disparities in direct patient care, target treatment therapies, define symptomology across all specialties to help define the important role other specialties have in the management of Syringomyelia and Chiari, prevent complications, and the most important reason change is required.......it will save lives!!  

WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE

www.wstfcure.org

Copyright March 2016



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