TOP NEUROSURGEONS:

Thank you for your support in raising the awareness of Syringomyelia, and supporting those living with SM.

Syringomyelia, also known as SM, a Syrinx, also known as a tubular filled cyst that forms inside of the spinal cord. Unfortunately there are many who are living with this rare, progressive, incurable, disabling neurological condition without knowing it due to the lack of knowledge of this rare condition, by raising awareness and insisting that professionals/ doctors get educated - we are trying to help others. There is much work to be done in order to increase the amount of research being done, raising awareness in the medical community as well as with the public, to get the help that those living with SM need to reduce the suffering by those with SM, their family and friends.

Our Syringomyelia Awareness Projects:

www.syringomyelia.ca & www.smawareness.ca was founded by Carion Fenn and is operated by friends, family, those living with Syringomyelia. As a group we work together in support of each other in hopes of educating not only the public but the medical practitioners as well. With all the medical break-through these days we are hoping to live a relatively pain free lifestyle and have a cure someday.

Until then we work in support of each other because "Together we are stronger".

When first diagnosed, the word Syrinx is usually unknown to the patient, and knows of no one living with this disorder or condition. It is unfortunate that not enough research has been done to help those that suffer with Syringomyelia. It is a difficult time, not only for the person diagnosed, but also for others suffering from SM that was unable to get informed medical practitioners and thus, no diagnosis. An online group for Syringomyelia Awareness was started and once the voices of others crying for help were expanding it became a mission to start our support systems to help others around the world.

When someone is first diagnosed with Syringomyelia, all they know is that their world is about to change, how drastically is yet to be discovered.  What makes it worse is that because the condition is considered rare (more so under-diagnosed or miss-diagnosed), many doctors are not familiar with it and cannot recommend what should be done, so the patient gets sent to a doctor that is suppose to be able to "fix" the problem, usually a Neurosurgeon(NS) or Neurologist(NL). Unfortunately, in most states, provinces and Countries, even these specially trained doctors are unfamiliar with the condition.  Some even will go as far as to tell you that the pain could NOT be caused by the condition, which anyone with a spinal cord injury can tell you is NOT the case.  So the patient goes in search of answers about this rare condition only to find out that there are really no answers and there is no cure for this horribly painful condition. This makes things so much worse for those dealing with the constant pain and confusion, and it makes thing hard on their family and friends because there is nothing they can do to make things better or help them. It can cause someone with a rare condition like this very isolated and depressed.

Our founder, Carion Fenn went in search of information, treatments and cures only to find that there was little available and of course nothing that could be done.  In order to help others who are coming to this condition the way so many of us with SM have, an online group was formed on Facebook.

After the informational pages were available and our main website www.syringomyelia.ca was launched. Carion heard the outcry for more support from others who were suffering with SM, and her mission became not only to educate those on this painful and rare condition, but to offer a place for those suffering with SM a place to share their stories, concerns, experiences and lives. A place where someone would understand without having to have it explained to them because they too had experienced similar problems. Her mission became a reality when she started www.smawareness.ca, a unique Social Network for those suffering with Syringomyelia (SM) and other related conditions like Chiari Malformation (CM). A supportive place where others like yourself or someone you care for who is dealing with the symptoms and side effects can feel at home among friends. We offer many helpful resources, educational information/ links, and even some jokes on our Social Network to help you smile when you need one?

When you become a part of our SM family, we hope that you will take advantage of Groups like, "Newly Diagnosed", even if you have been a veteran of SM/ CM for years our groups provides information that can be very helpful in managing your conditions. We also provide helpful links for those applying for disability in both Canada and the US.

Our Syringomyelia Projects is a place to share, learn and support those with Syringomyelia (SM), Chiari Malformation (CM), and other related conditions.

Currently there is no cure for Syringomyelia!

In order to assist those living with SM our goals and missions must be met. We genuinely ask for your support in helping us fulfill this much needed void. Spinal Cord Injury such as Syringomyelia can happen to you or your loved ones. Help show the people who are living with this disorder that they are not alone by purchasing our wristbands or signing our guest book. Thank you for your support and keep us in your prayers

We are proud to introduce our Syringomyelia Welcoming Angels:

Nicole McFadden, Joanna Saggese, Jody Lott, Leslie Alexander, Fleet

Our Angels headed up by Nicole McFadden, will be a new members first experience with members on our site. Hopefully, this will help ease the new members and especially the newly diagnosed into the group, introducing themselves and the things available on the site. Our welcoming angels are also first to wish our members a happy birthday. Join us for support and see our Angels in actions!