New York – June 1, 2015 – (RealEstateRama) — Nassau County Executive Edward P. Mangano (4th left) proclaimed May Syringomyelia Awareness Month in Nassau County at a ceremony held in the Theodore Roosevelt Executive and Legislative Building. Members of The NY-Long Island Chapter of The American Syringomyelia & Chiari Alliance Project, Inc. (ASAP) met with County Executive Mangano and discussed the problems facing Syringomyelia (SM) patients and their families.
Syringomyelia (SM) is a rare and devastating neurological disorder that over time can damage the spinal cord and result in serious disabling symptoms. It affects tens of thousands of children and adults and has limited treatment options.
Syringomyelia Awareness Month is being held in May across the United States. It was created to increase awareness and support for research and treatments for syringomyelia patients.
Syringomyelia (SM) is condition occurring when a fluid-filled cyst or syrinx forms within the spinal cord. This is often caused by a congenital defect known as Chiari malformation (CM) and can also be caused by trauma to the spinal cord (i.e. whiplash), hemorrhage, meningitis, tethered spinal cord and spinal cord tumors as well as many other spinal disorders. It can affect anyone, at any time during their life. As the cyst grows, syringomyelia causes the damage and destruction of spinal tissue, which results in chronic and severe pain, neuropathy, paralysis, stiffness, loss of bladder and bowel control, muscle atrophy, headaches, loss of sensation in different parts of the body and more.
Symptoms and their severity vary from patient to patient. Syringomyelia is often progressive, causing the symptoms to worsen and new symptoms to appear. Progression may occur very suddenly or a patient may deteriorate very slowly over a period of years. There is no cure for syringomyelia.
Surgery is the only way to halt growth of the syrinx, but such procedures are high risk and are not always viable. For many patients, the only treatment option is pain relief. Due to the nature of the condition, treating pain associated with SM is very difficult.
It is the hope that Syringomyelia Awareness Month will generate awareness about the condition and will raise desperately needed funding and support for research into more effective treatments for syringomyelia, and eventually a possible cure.
This year ASAP will hold their annual conference in Ann Arbor Michigan, hosted by Dr. Cormac Maher, Board Certified Pediatric Neurosurgeon and associate professor at the University of Michigan, Ann Arbor. Dr. Maher has assembled more than 25 neurologists, neurosurgeons and other medical professionals and specialists to speak regarding Chiari Malformation, Syringomyelia and related disorders. The three day event will take place form July 22nd through July 25th at the Ypsilanti Eagle Crest Hotel in Ann Arbor. Over the course of the three days, speakers will educate persons affected, parents, children caretakers, loved ones and peers of new research, latest treatment modes, and alternative therapies support resources etc. There will be a children’s program where children too young for general session will take part in fun and educational activities while their parents learn about the disorders. This is a one of a kind event open to all people, not just medical professionals. For more info please visit www.ASAP.org
The NY Long Island ASAP support group has been led by Mrs. Shananne Hutter for the past 3 years. Mrs. Hutter was diagnosed with Syringomyelia, Chiari 1 Malformation in 2003. Through the support group, she provides support, raises awareness and funding for research. For information on upcoming meetings in Nassau County, visit the NY ASAP Chiari, Syringomyelia and Related Disorders Support Group on Facebook or email nyasapsg (at) yahoo (dot) com.
Pictured (left to right): John Caemmerer, ASAP Board of Directors; ASAP Member Maureen Routledge; Patrice Schaublin, President Board of Directors; County Executive Ed Mangano; Shananne Hutter, LI-NY ASAP Support Group Leader, along with her family Katie, Sara and Stephen Hutter.
