Bringing about awareness for Klippel-Feil Syndrome

By Sharon Rose Nissley

Guest Columnist

Over five years ago, I was working full time as an Interior Designer at Richard L. Johnson Associates in Rockford. I began having issues with pain in my neck and head. This increased dramatically and I soon learned I have a rare condition called Klippel-Feil Syndrome. KFS affects one in 42,000 people.

I was shocked at the lack of information and knowledge that is available, and lack of understanding and treatments to help patients with KFS.

I soon learned that I also have Ehlers-Danlos Syndrome and Cervical Dystonia. I had previously been diagnosed with Vasculitis. These are rare conditions. As I searched and struggled to find answers, an advocate for rare disease was born.

Life has really changed and I am much more limited. Along with Interior Design at RLJ Architects, advocating is something that is so important for improving patients’ lives. This is something I can do to help when I often feel frustrated and in pain with little means of relief. I use the pain as fuel for something good.

The skeleton key is our symbol of hope for freedom from a rare skeletal disease. I had a bunch of old skeleton keys in my home from the previous owner. I really disregarded them; they sat in the basement for eight years until I had a light bulb moment!

Now families who are affected by KFS use the skeleton key to help raise awareness. Instead of having a ribbon for our cause, we have a key!

For the second time, this summer I was nominated by my rare disease peers as a Global Genes Champion of Hope, as a rare disease advocate for Klippel-Feil Syndrome Freedom, which I founded last fall 2014.

More information is available at https://globalgenes.org/championsofhope/ or https://www.facebook.com/KlippelFeilSyndromeFreedom.

For the past three years, I have spearheaded Klippel-Feil Syndrome Awareness Day as a patient.

This year is our first year that our community is doing an event called #KFSummertimeStroll all over the globe, People are walking in their local areas to raise awareness for KFS including Illinois, Texas, California, Arizona, New Jersey, New Hampshire, Norway, United Kingdom, Ireland, and Germany to name a few larger #KFStroll events taking place!

T-shirts were sold internationally to raise funds for Rare Disease. All proceeds went to Global Genes.

I will not be participating in a walk locally, as I will be handling incoming photo’s, videos, and stories along with other volunteers, that come in about the events – the central location for KFS Awareness is here our area!