Rare Disease Health & Wellness Support Group
Topic: Aqua Fitness
Presenter: Town of Ajax - Recreations
How to Access Support:
1) Ajax Public Library (Main Branch): 55 Harwood Avenue South Ajax ON L1S 2H8 Canada
2) ONLINE - SKYPE: https://meet.lync.com/carionfennfoundation-carionfenn/cgf/7FDC6H0D
3) Phone: +1 (647) 749-7011 Conference ID: 5005192
Find a local number: https://dialin.lync.com/
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 Malformation (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 Diseases/ Disorders: There are over 7000 known rare diseases/disorders. 1 in 12 Canadians will be affected by a rare disease. Rare in the USA, when it affects fewer than 200,000 Americans at any given time. In Europe when a disease affects fewer than 1 in 2000 person, the disease is defined as rare. 50% of rare diseases touch children.
We would like to invite you to join us in our participation in the Town of Ajax, Ontario Canada
lining the parade route for our #HMSAjax40 Special Parade & Ice Cream Social on August 28, 2016.
Some of our members have asked if we could perhaps do something in the way of easy to prepare
meals etc. We all experience a challenge with standing for long periods or hand weakness. If this is of interest to anyone I want to hear from…Continue
Hi all. I have a question I am hoping someone can help me with. My son, 22, college student, was diagnosed with syringomyelia last year. It started out with tingling in his pinky finger. We initially thought it was ulnar nerve related because…Continue
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 Ken Anderson [sm] Sep 23.
Afternoon everybody, feeling down, something is slowly paralizng my hands and feet, I have had to wear a postetic brace on my left foot for over a year now. Now my right foot is staring, I only feel it on the right side of it and it that part hurts…Continue
Started by Betty Corey. Last reply by Betty Corey Sep 1.
Afternoon everyone, feeling down, something is slowly paralyzing my hands and feet. I already have to wear a postetic brace on my left foot, for over a year now, but now I am losing my right foot also, about the only feeling i have in it is at the…Continue
Started by Betty Corey Aug 29.
Posted by Carion Fenn Network on February 29, 2012
Posted by Tanya on September 13, 2016
by Carion Fenn Network Added June 10, 2016 at 1:35am
by Carion Fenn Network Added December 5, 2015 at 9:40am
by Carion Fenn Network Added September 15, 2015 at 10:39am
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