My name is Kasey Francis! I’m 19 years old and I’m an aspiring DJ and music producer! I was diagnosed with Ankylosing Sponglyitis last week after having chronic neck and back pain and stiffness for the past 5 years after what we thought was from a skateboarding incident. The trainer who looked me over after the spill said that my neck had been spasming and that was the cause of my current discomfort but that it should subside and he sent me back to camp. I was at a week long skateboard instruction camp, and being 14 years old, I figured, nothing was permanent especially the little aches and pains from faling. But unfortunately.. over the next five years, the pain and stiffness slowly started to take over my back. I tried switching backpacks for school, thinking my backpack was just too heavy. I got a new bed, hoping that would help and it took a very long time and many misunderstandings but finally at the age of 19, I have been diagnosed. After getting my high school diploma last year, I haven’t been able to start college because of the pain and discomfort. Fatigue in the mornings and loss of appetite has caused me to drop from 155 lbs to about 125, but that apparently doesn’t seem to be an issue according to my Rhematologist, or at least not yet. On top of AS, I am almost completely deaf in my right ear and have been the majority of my life. I’ve had numerous ear tubes put into place in hopes that it would help my ear canal stay structurally sound but now after multiple failures, I’m now looking at a long awaited ear drum reconstructive surgery, in a last attempt to fix the problem. Because of this problem, for the the past couple years, I personally believed that my ear had to have something to do with my pain and stiffness because so much of it was based in my neck areas, and my ear seemed like it was infected, constantly draining out blood and wax every single morning. I had doubted myself, thinking maybe I was just supposed to go through all of this, and I was just being a complainer. So many different scenarios went into my mind, most of them selling myself and the misery that I had gone through short because I just couldn’t believe that it was really happening to me, along with numerous thoughts that my dreams would be prevented because of my condition but I still DJ and make music constantly. It is what helps me get through this terrible disease! Unfortunately, before I can start Humira injections, I have to get the tympanoplasty (ear drum surgery) and I’m hoping that will allow me to hear better! Then soon after my hoping is that Humira will help with this AS. My life slowly has de-evolved from an athletic, go lucky, positive kid to someone who has maybe two people who are close and I feel as if I’m rotting away. It’s difficult for me to turn my head, or dry my hair, or stay in one position too long and any bit of relief would be extraordinary!
I’m very very glad that I came across the Faces of AS site because already I have read peoples stories and comments on the Facebook page and I’ve cried. It’s an amazing feeling knowing that I’m not alone and I never knew how many other people felt the same way I do, and are in the same boat I am and that to me is something I will never forget and I will always cherish. I hope to be able to contribute for the rest of my life as long as others have to suffer the way we do, no one should feel alone the way I have and thank you so much for all that you do to ensure that we don’t have to.
California United States of America