My name is Barry and I know that it is truly a miracle that I found Gera.
See, we have something in common that most couples don’t. It’s not a shared love of certain music or the same Starbucks order, but the fact that we both were born with Klippel-Feil Syndrome. KFS is characterized by the abnormal joining of two or more spinal bones in the neck, which is present from birth. It is part of the larger mystery of rare disease, but it’s because of the shared stories of patients from all over the world that we would be destined to meet.
Our path on the Klippel-Feil Syndrome journey is almost identical, although Gera had a rougher time of it. From birth, something was obviously wrong, and so we were both diagnosed within hours. Gera and I were in and out of the hospital for most of our childhood, and we were warned against activities that could cause further damage to our rare congenital birth defects. This fact may have saved us a lot of pain, though from what the statistics demonstrate, that could be coming in the future for us. The similarities don’t end when it comes to our social lives. We are both never married, no children, living single.
It was a Facebook group developed by advocate Sharon Rose, that changed all that.
I had never talked to or met anyone with my affliction before! I had heard of other people who have Klippel-Feil Syndrome (KFS). My sister, who is a nurse, met one boy in a hospital. One day a doctor, waiting on food in a McDonalds correctly identified my rare defect, but that was it. All of my childhood doctors had also seen only one patient with KFS – me. I come from a family of five siblings, and I am the only one with KFS. You might say I felt pretty alone in the universe.
As Facebook started making the news and as users started topping a billion, I enjoyed looking up old friends from high school/ Then one day, I typed Klippel-Feil Syndrome into the search bar, and discovered Sharon’s page. Soon I sent in a request to join the adult group, and Sharon friended me within a few hours. I devoured the newsfeed; it was amazing to see people like me! Though many weren’t exactly like me. KFS is not as obvious for some physically, as it was for me. For some with KFS, it’s more of a hidden disease, inflicting chronic pain, and affecting organs
A month or so later, I found posts in the adult group from someone new; Gera! She was asking the group about dating. Her posts about loneliness and dealing with shallowness resonated with me. I sent an e-mail but her privacy settings wouldn’t allow it to her main box, so I sent it to “other messages”. Days passed by and I realized it was probably a box that didn’t get checked often. Days turned into weeks, which turned into months, then one day when I’d all but forgotten sending an e-mail, her reply came. It seems she had been busy traveling to France. She’s quite the traveler!
Gera and I were intrigued by our similarities, and she decided to meet me face to face. She flew down from Alberta, Canada to my home in North Carolina USA and the rest, as they say, is history. Long distance relationships are hard to manage, but I’m convinced we will make it. We see each other every day on Skype and FB, and my turn to visit Canada is in the works. For Christmas this year, Gera gave me this framed skeleton key, the symbol of hope for KFS, with two hearts attached. We enjoy each other’s sense of humor every day.
None of this would have been possible without the Sharon’s advocacy and the Klippel-Feil Freedom Facebook page. Please get involved for Rare Disease Day which is on February 28th and Happy Valentine ’s Day!
Barry
Feel free to share our story with the hashtag #KFSweethearts and join the Facebook group that started it all right here!
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