The Mighty: 3 Reasons Why I Advocate for Klippel-Feil Syndrome

August 6, 2016

Thanks to The Mighty for this piece.

Klippel-Feil syndrome (KFS) is a rare skeletal condition. It is diagnosed when two or more of the seven vertebrae in the neck are fused together congenitally, or from birth. KFS is permanent and can be degenerative. Some patients with mild iterations of KFS may never experience significant symptoms, while others may suffer from chronic pain and severe disability, requiring multiple surgeries.

With Klippel-Feil Syndrome Awareness Day on August 6, I asked myself why I advocate. In 2015, our KFS Freedom community is doing an event for the first time called the #KFSummertimeStroll. We welcome everyone across the globe to participate. We’ve put together new materials and have people ready to take action for a rare skeletal disease that has greatly affected my life and the lives of people I now call dear friends. So why do I advocate?

1. We have remained in a bubble for far too long. When I was first diagnosed with Klippel-Feil Syndrome I was 38, which was over five years ago now. I remember sitting in my car on a rainy day staring at an x-ray of my neck. I remember saying aloud to myself, “Nobody will ever know about this, I will never tell anyone!” I was embarrassed. I had a rare condition that’s estimated to affect about 1 in 40,000 people.

But something changed big time when I realized that we lack so much information, research, treatments and understanding because KFS is rare. I couldn’t find physicians who understood my needs or the urgency to “fix” the issues. I soon learned nobody else I talked to with KFS could either. Parents and patients were lost and lonely trying to find relief and answers. KFS was given its name in 1912. It occurred to me in 2012 that if someone did not step up, another 100 years could go by and nothing would change.

2. I am in pain. Daily unforgiving chronic pain. Pain that makes it hard to sit or stand still but hurts to move just the same. The way that pain seems to occur for KFS patients is hard to get a grip on, hard to manage and hard to relieve. However, the pain keeps me advocating. The pain is like a 911 signal that is constantly going off, yet I can’t attend to it in a way that brings true relief. I had to find a way to use the pain as fuel for something else, something positive so I can help others.

3. We have to think about the future. I don’t want anyone to be in pain. I don’t have children, but I want our young ones who have KFS to experience less difficulty finding care. I want people to have care for an improved lifetime. I advocate so doctors who treat patients with KFS will have a better understanding and compassion for what we face, Adults are often turned away, told KFS does not cause issues or aren’t believed. I hope that through advocating, kids today won’t experience what adults with KFS currently do, and everyone affected will have better lives.

I advocate because that’s what I was repurposed to do when I learned I have a rare condition that’s so in need of understanding.

Follow this journey on the Klippel-Feil Syndrome Freedom Facebook page.

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