Four years ago, after living for almost twenty years with chronic headaches and neck pain, I decided to cut my hair short. After all, every doctor I had seen to that point told me the pain was all “in my head.” What did I have to lose? I was desperate for relief. Much to my dismay it did NOT work. The pain worsened and I began experiencing numbness and loss of function in my arms. Even blow drying my shorter hair was a challenge some days.

Finally on 12/12/12 after 20 years of searching for answers I was diagnosed with Klippel-Feil Syndrome. KFS is a rare degenerative musculoskeletal defect that not only impacts one’s spine, but muscles and organs as well.

It is now 26 months since my diagnosis and 22 months since my spine surgery. I have been on a mission to grow my hair long. The other day, in a rush to get out the door, I grabbed for a rubberband and and pulled my hair back. Much to my surprise, IT STAYED! A small victory when living with chronic pain and a rare disease. My ponytail is my symbol of HOPE!

 

March is the Month to Share YOUR Story!

Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.

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