Support Changes Things: Life with Klippel-Feil Syndrome

I was diagnosed with Klippel-Feil-Syndrome and Scoliosis at birth. Immediately the doctors noticed that there was something different about me. There was so little information at that time about KFS that the doctor had told my mother that I wouldn’t live past a year and if I did I would never walk or talk. Well now twenty years later I walk, I talk, I read, I write and I love to live my life. I have had significant struggles throughout my life but I have never had to go through them alone. I always had the support of my family, my friends and my “team” of medical doctors.

I have had four surgeries to correct my scoliosis at the Shriners Hospital in Portland Oregon, and I am so grateful that I was given that opportunity as it has significantly increases my quality of living. At times it was (and still is) hard to live life with this rare disease, because I am sometimes picked on and stared at and the pain I live with on a constant basis is sometimes to debilitating to live my life, I know I am a lucky person because of all of it. I am so thankful for support groups and websites such as this that are focused on finding a cure and treatment for rare diseases. Its nice to know I am not alone in my struggles.