Please sign our petition to recognize Rare Disease Day in Canada
Thank you. Carion Fenn
1) Yoga Support Group Educational Workshop
April 12, 2018 at 6:30pm to 8:30pm
Host: Carion Fenn Foundation in partnership with Ajax Public Library
Join the discussion at Ajax Public Library or through Skype online:
Ajax Public Library (Main Branch, Rotary Room): 55 Harwood Avenue South Ajax ON L1S 2H8 Canada.
2) Watch Health 180 with Carion Fenn on Rogers TV Durham, Channel 10 or the Live Broadcast online. Tuesdays at 6:30pm. Health 180 with Carion Fenn, explores healthcare providing health tips, patient stories and expert advice for anyone interested in health, wellness and living their healthiest life on Rogers TV Durham Channel 10.
3) Mental Health Symposium: May 8, 2018 (Town of Ajax), for details <click here>
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: 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: 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.
Chronic Disease: A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.
Carion Fenn Foundation is a registered charity established to promote health by providing support services and resources for chronic disease management, while educating the public and those suffering with Syringomyelia and Chiari malformation about rare diseases.
I'm looking for people who are members of the network who are from Newfoundland. I'm trying to find the names of some doctors here who diagnose SM. I had a cervical fusion done in 2010 and have been in constant pain ever since. I have all the…Continue
What happens when a doctor becomes a patient, Dr. Soania Mathur family physician diagnosed with Parkinson's Disease Spoke with Carion Fenn on Health 180 with Carion Fenn on Rogers TV Durham.
We often think about Family physicians…Continue
I need your help in signing our petition to recognize Rare Disease Day in #Canada. 350 Million people globally are fighting rare diseases. Let's do this for our #future generations. Please ask your family and friends to join in and help make a…Continue
Comrades, Lets hear some support for our athletes, the Red White and Black Paralympic Team !!
Years back I played on the Canadian Team and what a fun time it was. The camaraderie with teammates, the thrill of victory and the agony…Continue
Have you ever stopped to think about what others may be going through or do you only think about it when a disability is visible? It is estimated by Invisible Disability Canada that 3.8 million adults in Canada are limited in their daily activities…Continue
Hello everyone, I've posted here before and got some very useful information from a number of members. My story is a long one but i will try to make it short. 10 years ago i noticed a lot of unusual fatigue and perceived weakness in my legs, …Continue
DNA on drugs: How genetic tests could make prescriptions more preciseIt’s well known that different people can react differently to the same drug, with some patients feeling no effect – and some experiencing unwanted, even fatal, reactions. Now that…Continue
I am looking for some information from anyone with syringomyelia that have been pregnant and their delivery choice. My daughter has Syringomyelia and is pregnant with her first child. Some doctors say it is safe to have natural birth while others…Continue
by Carion Fenn Added June 10, 2016 at 1:35am
by Carion Fenn Added December 5, 2015 at 9:40am
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