Rare Disease Support Group Meeting at Ajax Public Library 6:30pm - 8:30pm. Lick on the link below to Access.
What is Syringomyelia, Chiari Malformation, and Rare Disease?
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: 1 in 12 Canadians have a rare disease. When a rare disease affects fewer than 200,000 Americans at any given time, the disease is defined as rare in the USA. In Europe when a disease affects fewer than 1 in 2000 person, the disease is defined as rare.
It’s the responsibility of our subscribers to take the initiatives to be a part of the Chat Room or Online Support Groups, space is limited and based on a first come first serve system - all members have the same opportunity to be apart of the support programs we provide.)
If you are not a member of our network, after paying for your subscription, please visit our network www.togetherwearestronger.org and request a membership. Subscribers are responsible to ensure that they request membership from our network at www.togetherwearestronger.org.
Pictures needed from patients who have Syringomyelia, Chiari Malformation and other Rare Diseases / Disorders.
We need more pictures of patients to show what they go through, surgeries etc... for our Websites, Carion Fenn…Continue
There was a time on this page when I knew who I was chatting with. Sometimes intimate details about experiences.
However, I have seen more and more come here begging for information yet refuse to share, ever. No photo really bugs me. No…Continue
G'day All my name Shaun Kelly I live in Gympie Queensland Australia.
I have read with great interest over the last six months of peoples stories and how they deal with their disease and symptoms, it was a great relieve for me to find this…Continue
OK, so my doctor is finally beginning to listen to me. I've tried really hard not to "tell my doctor his business" but I have continuously brought up this group, and a reference that I saw in this group to some studies done by the NIH. I have a…Continue
Started by Patrick Milligan. Last reply by Lori Hart (SM) angel/Canada Rep on Thursday.
G'day All, I was wondering if there is some where on this site were all information recieved on peoples condition type, symptoms, action taken, handy hints etc is collated for reference.For example I have a syrinx T9 - T11 caused by…Continue
Started by Shaun Kelly. Last reply by Lori Hart (SM) angel/Canada Rep Apr 11.
I was wondering if anyone of you have had difficulty urinating because you are in so much pain. I feel the need to go, but I am so tight and in so much pain that I can not pee. This is not the first time I have had this problem, but today was the…Continue
Started by Mary Rudy (SM). Last reply by Lesley Micallef Apr 3.
Posted by Carion Fenn Network on April 21, 2016
Posted by Patrick Milligan on April 27, 2016
Posted by Kristen on April 13, 2016
by Carion Fenn Network Added September 15, 2015 at 10:39am
by Carion Fenn Network Added May 13, 2015 at 11:18am
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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