Healthy Living & Chronic Pain Rare Disease Support Group Meeting at Ajax Public Library 6:30pm - 8:30pm. Click on the link below to join us. https://meet.lync.com/carionfennfoundation/smcm/ML4W6CP8
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: A condition affecting fewer than 1 person in 2000 in their lifetime. 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.
Carion Fenn Foundation 1 year Anniversary Video with Video Pledges from Ajax & Pickering Mayors & MPP Michael Harris and more. We are filming our 1 anniversary video which we will be editing a 1 minute promo segment to promote our Rare…Continue
To refresh my story, I've been dealing with progressively disabling symptoms for the last 15 years. I've been seen by Johns Hopkins, The Chiari Institute, and now a neuro muscular doc at Drexel. She wants me to have genetic tests which I cannot…Continue
After noon everyone, welcome new members to the group.I also have a question for the group.I seen the neuro surgeon a fewdays ago. He has done shuntsurgies and decompression surgeries,so I feel confident he has enoughexperience. He told me my…Continue
Started by Betty Corey 12 hours ago.
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 Jayme on Thursday.
Good morning to the group. Heres a update on me and it's been a while since I have posted here.The naropothy I have had moved into my chest, maybe from my neck and shoulder? At first I wasthinking it was my heart, so when I went to the doc, he told…Continue
Started by Betty Corey. Last reply by Betty Corey May 16.
Posted by Lori Hart (SM) angel/Canada Rep on May 15, 2016
Posted by Betty Corey on May 6, 2016
Posted by Patrick Milligan on April 27, 2016
by Carion Fenn Network Added September 15, 2015 at 10:39am
by Carion Fenn Network Added May 13, 2015 at 11:18am
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