My name is Julie and I am a 26 year-old who is living with Chiari malformation and Syringomyelia since 1995. In 2000 I was diagnosed with SM and CM with a spinal cord syrinx from C-3 to T-11 after 5 very physically painful and confusing years trying to understand WHY I was declining in function and increasing in pain. Within the week I was in surgury for Chiari decompressive surgury with craniectomy of C-1 and C-2 and duraplasty.

It has been 10 years since surgury, and I have been lucky enough they caught it in time to keep walking, I have decreased function in my hands, excruciating headaches, neck pain and my left shoulder/arm and back is a mess with nuero-muscular issues. My immune system seems compromised so there are a lot of hospital and E.R. visits for infections and failed systems. I exhibit all the typical symptoms of the disease, I live a lower function lifestyle and am at times frustrated with the lack of answers to some of the questions I- and the CM and SM community- are looking for. This year I celebrate my 15 year survivor mark and 10 year survivor mark for falling ill, and surgery, so I want to take matters into my own hands and help get the ball rolling. I really hope for further research for finding more possible treatments and- of course- a cure!

I have been blessed with some AMAZING support systems within my immediate and extended family and friends- Thank you all for your prayers and support, to know we aren't alone in this battle means the world to me! Who you surround yourself with really says a lot coping and enjoying what you DO have. God Bless!