Syringomyelia (SM) (Sear-IN-go-my-EEL-ya); also known as SM, is a Syrinx (also known as a tubular filled cyst) that forms inside of the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the center of the spinal cord.
Chiari Malformations (CM) (Key-Ar-ee-mal-for-MAY-shun); are structural defects in the cerebellum, the part of the brain that controls balance. When the “tonsils” of the brain stem fall below the base of the skull, it cuts off or blocks the flow of Cerebral Spinal Fluid that runs between the brain and the spinal cord.
Rare Disease: 1 in 12 Canadians have a rare disease, when a rare disease affect fewer than 200,000 Americans at any given time, the diseease is defined as rare in the USA. In Europe when a diseease affect fewer than 1 in 2000 person, the disease is defined as rare.
A frustrating doctor's appointment for my daughter today. She has two syrinx - one in her cervical spine and one in her thoracic spine She had a doctor's appointment today and was told that they are both small and would not cause her symptoms,…Continue
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If you are passionate about helping to provide support for those affected with Syringomyelia & Chiari Malformation and want to do more to help support our community and increase awareness. We…Continue
Goodmorning everybody,if you remember my post from afew days back, I finallyspoke to my neuro doctor,and on the 19th I see him,and he is leaving it up tome if I want to see the neuro surgeon,or if I want to ride this onout. I am thinking i am 'd'if…Continue
Started by Betty Corey. Last reply by Lori Hart (SM) angel/Canada Rep on Monday.
Hi everyone,Im a 27 yo male who was diagnosed recently with SM. Over the last three years my symptoms progressed.Four years ago I had no symptoms at all. Three years ago I experienced symptoms for the first time when I squatted with 150 kg on my…Continue
Started by Mousse K (SM). Last reply by Jonathon Colmer Feb 3.
Posted by Sarah on December 2, 2015
Posted by skyeomalley on February 6, 2016
Posted by Brigitte Brideau on February 3, 2016
by Syringomyelia & Chiari Network Added September 15, 2015 at 10:39am
Carion Fenn Foundation is a Non Profit Corporation, we are thankful for the support of the Patti Dawson Award, making it possible to have a foundation that will help provide support around the world, help increase awareness about Syringomyelia & Chiari Malformation.
We are in the process of petitioning The Government of Canada and Members of Parliament to recognize our Syringomyelia & Chiari Malformation Day July 17 and the Month of September Federally:
We had the opportunity to collect signatures which was a great success and we thank those who helped us collect signatures. We thank MP Chris Alexander's office for their help and guidance in getting our petition presented to The Government and Canada and Members of Parliament. We are hoping this will be recognized so that we can help further our causes and help make a difference.
Special thank you to the following people or local Network for their help in helping us to collect Signatures to Petition the Canadian Government/ Parliament to recognize our conditions federally:
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