Rare Disease Support Group Meeting
Topic: coming soon
Presenter: coming soon
1) Ajax Public Library: 55 Harwood Avenue South Ajax ON L1S 2H8 Canada
2) ONLINE VIA (SKYPE): https://meet.lync.com/carionfennfoundation/smcm/8JSF7STN
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.
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
I am in pain all the time, I have a syrinx of last know of 6cm by 3mm on my spinal cord and a synovial cyst on my tail bone 1"1/2 and also bone deterioration through out my spine from top to bottom. In the last year or more I have been having lower…Continue
Started by Sherry Bourque SM. Last reply by Lori Hart (SM) angel/Canada Rep Jul 21.
Hi everyone,Let me tell you a bit about myself. I'm Andrea, I'm a 24 year old mother to a 3 year old boy and am marrying my fiance next weekend.I was in a jetski accident 2 years ago and initially had a torn muscle in my knee bit was otherwise okay.…Continue
Started by Andrea Karpinski. Last reply by Shaun Kelly Jul 14.
Hi,I have begun to have burning in my feet and hands. It's pretty intense. Do I speak to my family doc, Neurologist, or do I see a pain specialist??Thanks for any help. This is new and painful.Continue
Started by Ed Van. Last reply by Lori Hart (SM) angel/Canada Rep Jul 14.
Posted by Andrea Karpinski on July 10, 2016
Posted by Lori Hart (SM) angel/Canada Rep on July 29, 2016
Posted by Lindsay on July 8, 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
Our websites are intended for information purposes only and may or may not apply to you. We are not doctors and we do not give medical advice. We do not endorse any doctors, products or procedures. Always consult a qualified medical professional for medical care. Please refer to our terms of service before using our sites. Terms of Service