1) Rare Disease Proclamation: February 20, 2018 (Town of Ajax), for details <click here>
2) Rare Disease Flag Raising: February 28, 2018 (City of Pickering, for details <click here>
3) March 2018
Presenter: Coming Soon!
Host: Carion Fenn Foundation in partnership with Ajax Public Library
How to access our Support Group Meeting:
Location - Ajax Public Library (Main Branch): 55 Harwood Avenue South Ajax ON L1S 2H8 Canada.
Online -Coming soon.
4) 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.
5) 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.
Hey. I have an appointment with Pain Management tomorrow for an IV Lidocaine injection for pain to my lumbar spine. My syrinx/shunt is at T9 but I have multiple bulging degenerative discs in my lumbar and cervical areas as well. Plus…Continue
So I'm back in the ER again with lower abdominal pain. So tired of being in the hospital as a patient. Tired of seeing doctors. How about you?
Reviewing my new MRI from Lakeridge Health, comparing with MRI months before I gave birth with my son Eithan. Can't believe I have my son on my MRI Images. A step needed for giving birth safely with…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
Started by Matt Boczkowski in Uncategorized on Tuesday.
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
Started by Corrine in Sample Title Jan 29.
by Carion Fenn Added June 10, 2016 at 1:35am
by Carion Fenn Added December 5, 2015 at 9:40am
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