Blinded by AS
Ankylosing spondylitis diagnoses can take years to find, and they usually come after a ton of pain and unexplained symptoms with a search for doctors that will take you seriously. And sometimes we find it in the most interesting places, but also because something has gone horribly wrong.
I was born with Albinism, and with that comes being legally blind. I have struggled with eye pain my whole life and it was thought to be from straining my eyes to see. Which is very much a thing when you are legally blind. I could see color, shape, but no fine detail. I suffered from stomach issues as a kid as well, and my back really started to hurt in my late teen years. I stopped playing sports and life went on. But when I was in my early 20s, I suddenly had more issues with my vision and over a period of a couple of months went from issues with my vision to nothing but light perception. Then a couple of months later my sight was all gone. Nothing.
My optometrist discovered my AS
After seeing an optometrist who was new to my city she asked if my back was sore a lot. I said oh you have no idea. Off I went for some blood work, and I was HLA-B27 positive. This meant nothing to me until x-rays and a rheumatologist found I had AS. Treatment was started and my life was never the same.
Whenever I tell people that it was a new optometrist who had found my AS and started the journey to diagnosis, they are often so confused. We always associate going to the eye doctor with needing glasses, but the reality is that our eyes truly are windows to so much more going on in our bodies. When you are someone who is having issues with inflammation and pain, I believe that we should look at all avenues and our eyes truly can tell us so much more than whether we can see something with or without glasses. Even as someone who has zero vision there is the ability to see how my inflammation is doing just with the back of my eyes.
My life is drastically different
My vision loss was due to uncontrolled iritis/uveitis. I was now living a life that was so drastically different. Even though I was someone who was born with limited vision going from limited vision to no vision at all was something that I had to grieve and it changed my life in ways I could never have imagined. That was 10 years ago. In those 10 years, I have learned to live an amazing life, but the one thing that keeps me from doing so much is AS. When I heard that diagnosis, I never could have imagined the complex ways that AS would change my life. From my eyes, to my ability to walk, my affected intestinal tract, and so many other things that so many just do not associate with ankylosing spondylitis.
Get your eyes checked!
On forums I see so many people asking if this is iritis or uveitis or my eyes are sore. I just want to scream through the screen GET IT CHECKED. Had I been diagnosed sooner we could maybe have saved the vision that I had, and I wish I had had someone to say GET IT CHECKED NOW!
How much about your AS do you share with others?