Carion was a victim in a car accident which lead to her acquiring Syringomyelia. Like most people, she had never heard of Syringomyelia prior to being diagnosed. This rare neurological disorder which is only acquired one of three way: in the presence of a tumor in or around the spinal cord, as a result of a trauma, or as a result of a congenital deformation: is very debilitating and painful. There is no cure for Syringomyelia, but with new research being done, Carion is instrumental in making sure all those who suffer with this condition are kept aware of the newest information available.
Carion has earned considerable recognition with media appearances on CITY TV, CHTV, TV ONE, ROGERS 10, CFRB1010, and Flow 93.5 FM. Carion has also been recognized for her generosity and devotion to raising awareness for Syringomyelia and other rare conditions.
Kathleen Scrivano (SM)
Kathleen Scrivano is a special Education teacher in Edmonton, Alberta, who is currently living with Chiari 1 Malformation, Syringomyelia, and Fibromyaglia. She believes she acquired Chirari 1 Malformation and Syringomyelia from a car accident in 2001. She is very excited to be a part of this website and hopes to help others who first learn of this condition. She knows the lack of knowledge there is out there about this condition, which include medical staff.
We want to thank Kathleen and her students for raising money for us, which was used to pay towards the operation cost of our Social Network. We thank you on behalf of all of our members.
Marketing / Networking
Nicole is a student at York University as well as a network coordinator for 1st Fridays.
Toronto, ON Canada
Andrea is also an Executive Assistant with The Catholic Children's Aid Society (Toronto).
Nuclear Lounge Inc.
Over 20 years experience in the broadcast profession: Transforming ideas into innovative and cutting edge media.
Christine Webb (SM)
Henderson, NV USA
Syringomyelia Rep & Admin
SM & CM Network: America - Canada
SM Information for the newly diagnosed
Doctor's Corner - Giggles - Disability Corner
The Chatter Box - The Entertainment Room
Christine worked as a Dining Services Coordinator at an airline in NV where she decided to go back to school to become a nurse. Christine received her license as a phlebotomist which is what she did at the hospital when she got into the accident that changed her life. Christine had thyroid cancer removed in two surgeries in 99. She was told that her cancer was back in 02 but it was a false alarm, thank God. A loving mother of 3 and wife, Christine is on the path of helping to make a difference for those living with Syringomyelia. She hope that God will provide a cure which will give her the ability to live pain free someday, and maybe even finish her nursing program so that she can be the nurse she had planned on being..
Charlie Milne was born & raised near Annapolis Royal, Nova Scotia, Canada. Growing up on a horse ranch was her life. She has received numerous honors for her outstanding achievements such as the Nova Scotia Womens Progress of Excellence Awards; she was a 'poster child' for an Easter Seals Campaign; Maritime Appaloosa Horse Club Queen 1980, and she won several National High Point Awards with both her Appaloosa's and Quarter Horse's, achieving the honor of showing at Spruce Meadows in Calgary, Alberta at the age of 18. She not only was a Professional Performance Horse Trainer (at the young age of 16), but a Coach, Judge, Breeder and Serious Show Rider as well. Horses were always in her life until the accident took that away in 1999.
Digital photography is a relatively new passion for Charlie but loves the escape it gives her to celebrate life by taking in all the beauty that surrounds us and capturing it forever.
It's been 5 years since Charlie met Carion online and they are extremely happy with the outcome of the effort they put into making it all happen. "Don't just stop and smell the roses, but allow yourself to be captured inside and bloom with them". Ms. Charlie Milne
Woodstock, ON Canada
Nancy is an amazing person, friend, and a true inspiration and motivation in helping to encourage Carion to start our support systems, she met Carion through Facebook which they emailed each other, sharing stories, and trying to support each other when the support wasn’t there. Our support system developed as a result of the friendship between Carion and Nancy. She is a special lady, and we thank her for friendship and support.
In 2009 my life changed. I had an accident and waited six months for the MRI following that accident which brought on worsening fatigue and major migraines. Then in Dec. '09 the doctors found that I had Chiari 1 Malformation and Syringomyelia. I'd never heard of these before and I was so confused and hurting a lot. In August 2010 I had decompression brain surgery which has helped to stop the progression of my illness but I still suffer and have lost the strength in my arms to lift anything. Prior to this accident I did enjoy a media career and graduated from Ryerson's Radio & TV Arts program. In 1993 I got married and became a stay at home mom. In 2001 I got divorced and am now a single mom. In 2008 I went back to College and earned my diploma as an Educational Assistant, now following the surgery and accident I am unable to ever return to that job as an Educational Assistant because I am unable to lift and part of the job requirement involves lifting. My aim with the Syringomyelia Chiari Support group is to spread awareness about this often misdiagnosed condition. I hope that one day they will get charity status and we will be able to raise funds for research and be able to help others. Meeting others that share the same pain makes it so much easier to cope when you know others who've been there and understand. Together we are strong, together we will survive!
Our Angels 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.
Joann Saggese (SM & CM)
Middle Village, NY US
July 2010 Outstanding Social Network Participant
I am married and have 2 great kids. They are happy and healthy. I am grateful they are in HS, College, and I'm not toting them on my hip anymore! It's getting harder and harder to tote myself around these days trying to make the best of a bad situation. On meds in the meantime... hate the side effects but at this point, I have no other options.
Being an active and always independent person has been a defining part of my life living in the great Colorado Rockies. Outdoors was where I spent so much of my time. I was diagnosed with SM and CM in the summer of 2009. As anyone who has had this diagnosis knows, it was not an easy thing to take, but I have managed to learn how to handle the new and sometimes scary symptoms that SM is so very well known for. I was re-diagnosed in December 2011 with Congenital SM and not CM, although I am still trying to figure this change out. And despite having all of these issues with the pain and different symptoms that come and go, I am determined to live as full and meaningful a life as possible. SM is a condition I have, not a condition that has me.
Jill McLaren (SM)
Victoria, BC Canada
Hollywood, Maryland USA
I've been married for 40 years to the same wonderful woman. I have a grown Son and four precious Grandkids (3 girls and 1 boy). I live near the Chesapeake Bay and was an avid hunter and fisherman. I participated in some kind of organized sport from a boy, until I was in my 40's.
I've had SM symptoms since 1997, but I was not properly diagnosed until 2010. I went through a "boat load" of Doctors during that 13 years of "pain limbo". I finally found that Neurologist who knew what he was looking at. I have an 8cm Syrinx extending from C7 toT2 level. I also have a second smaller Syrinx and a Cyst formation at the T2 level. With seven disc bulges, annular tear, and some bilaterally neuroforaminal narrowing. All of this was a language I didn't understand, until 2010. In January 2011, I underwent Laminectomy and Duraplasty surgery at the National Institute of Health (NIH). I suffered some complications with the surgical wound ("Patch" was leaking spinal fluid) and I returned for a second procedure in March 2011. Since December 2010, I've been a participant in the NIH "research project" for SM/CM.
I retired with a pension from the State of Maryland in 1998, after 25 years in Law Enforcement. Although my decision to retire then was health related, I was eligible for (after 20 years) and I took a normal retirement. In 2002, I started a second career as the Chief of Security for a large Corporation. Our business was power plants and the company owned and operated plants across the United States. I loved the job, but I was forced to retire on disability in 2010. My condition had progressed to the point that I could no longer work.
I'm a fighter and I refuse to give in to this condition without an all-out war against it. I find it comforting to share my journey and theirs with others fighting the same battle.