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Canadian Syringomyelia (Sear-IN-go-my-EEL-ya) Awareness
My name is Carion Fenn, You could say that I was the woman that had it all. I had a great family, a wonderful place to live, wonderful friends, and I was one of the top designers in Ontario, having designed for Divine restoration, feature designer for several major home shows. My media profile included city tv, chtv, sun tv, cfrb1010, flow93.fm, dreamshomes and condominium magazine, and loulou magazine to name a few.
If you were to tell me then that my life was going to change so drastically that I would not be able to recognize it, I would have told you you were crazy! But that is what happened. I was in a car accident, I did not think it was so bad that it would change my life so drastically that at the time all I could think about was getting on with my life. It wasn't long before things started to go wrong and I was going to doctors to find out what I needed to do to get my life back on track. It was then I found out that I had acquiring an extremely rare disabling condition call Syringomyelia as well as cervical dystonia.
It turned out the car accident caused the fluid in my spinal cord to be pushed into the wrong part of the spine, a lump on my shoulder and an uncontrollable tilt of my neck , leaving me suffering in sever constant pain for the rest of my life.
With the glitz and glamour of being fabulous Fenn as the media called me, never did I think that my insurance company who I loyally paid for years and never missed a payment would have left me and my child without an income and the right benefit. My world drastically changed, the camera’s was gone, and my passion slowly died. The stress and pain was so bad, I would pass out because I couldn’t handle my situation physically and psychologically. It was hard enough losing my health. I never knew of this world of being left in the cold by a system which takes your money and left you in the dark when you need them. Syringomyelia is a rare condition which is being diagnosed more and more everyday as a result of a car accident through MRI's. Syringomyelia is a recognized condition for disability, but the Insurance company’s are not acting in good faith with their clients and should not hide behind the unknown and recognize the affect and damages a car accident does with regards to this condition.
Thank you for your support in raising the awareness of Syringomyelia, and supporting those living with SM. Syringomyelia, also known as SM, is a Syrinx, also known as a tubular filled cyst, that forms inside of the spinal cord. There are many others who are also living with this rare, progressive, incurable, disabling neurological condition and due to the lack of knowledge of this rare condition we must do something to help others. Much research, awareness to the public and in the medical community as well as help for those living with SM is needed to reduce the suffering.
Syringomyelia Awareness (www.syringomyelia.ca & www.smawareness.ca) was founded by Carion Fenn and is operated by family, friends, and 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.
When first diagnosed, the word Syrinx is usually unknown to the patient, and know 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 were 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 it became a mission to start our support systems and start a foundation to help others around the world.
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 donating or signing our guest book. Thank you for your support and keep us in your prayers.
Our mission is to provide a place for those living with SM to interact, share stories and find resources. Promote awareness and raise funds to help provide support for those living with Syringomyelia in hopes of having a cure someday.
The goals of Syringomyelia Awareness (www.syringomyelia.ca) are to: Testimony from "syringomyelia awareness social network":
Thank you everyone for thinking I am worthy of such an honor! I am truly humbled that you think enough of some of my posts, rantings (LOL) and words to nominate me as "outstanding member" for July. I think everyone deserves my nomination for giving me such great support, information kind words and prayers. I was diagnosed in 2006 and have been searching for people who understood what I was feeling, worried about, "ached" about, cried about..........It wasn't until finding all you really terrific people that I've been able to connect in such a profound way. I have truly made friends and developed a support system for myself that is priceless. Although I don't "see" and "talk" to you, I feel that I know so many of your hearts and souls..............and they are all precious to me. I look forward to my emails each morning...........to see what you are doing, to hopefully hear you're having a good day or received some positive news, to cry with you and to laugh with you. I never would have believed that the cyber world could offer me such a blessing. So, to all my dear friends and partners in the crime of SM/CM, I thank you with all my heart for thinking of me in this special way. And more than anything, thank you Carion for developing such a great website..........and Chrisitne for being a wonderful US rep and always the voice of reason! With deep thanks and love, XOXOXOXO JoAnn "S"
Raise public awareness in hopes of finding a cure someday.
Assist in providing support for those recently diagnosed, and those living with SM, as well as those closest to them.
Raise funds in support of SM Awareness.
Educate the medical community.
Posted by JoAnn Saggese (sm/cm) ~sm angel on July 25, 2010 at 8:47am
Our testimonials are taken from blogs as posted on our social network by our members', these testimonials are from the hearts of our members and not requested. This allows you to see exactly how our members' view our support systems and what we do for them.
Posted by Rita Blassingame (SM)(ACM) on July 28, 2010 at 12:59pm
I LOVE THIS PLACE!
i am really really happy that i have this place to come now!... last week i was terribly depressed and knowing i wasnt ready to be cheered up i stayed away from here... for real...i know that this place is really good for me... the syringomyelians and their allies that i am getting to know here are an amazing group...having somewhere to belong and ppl that understand is really something that no one should ever underplay the significance of...i am in a long distance relationship and not being able to always reach over for comfort when i need it is something that i have been trying to get used to this year... i am so so so glad that with this place if i need it i can just hit this button on my favorites toolbar and poof... within minutes i can find something that will give me comfort...thank you one and all...for the founders... for the members...for all that make this place what it is...wow... am i ever glad this site exists...remember be good to yous...