My name is Ryan Haynes and I have a most extreme case of Ankylosing Spondylitis. My entire spine is fused, as well as my ribcage. My neck is completely paralyzed. I haven’t been able to move my head in over a decade.
I am living proof that this is not an “invisible disease”. I am a walking warning that this disease is just as serious and dangerous as any other disease. All of our organs are at risk, as well as our immune system, and we are constantly fighting off complete paralysis.
I have been rushed to the emergency room numerous times with extreme infections, and have had extreme pain in every joint in my body. Due to the horrific Healthcare system in the U.S., I have never had health insurance, never had proper access to doctors, therefore have never been on any type of medication.
I have been left to survive this on my own, and figure out my own ways to eliminate my pain and manage my health. I am happy to report that I’ve been able to rid myself of my symptoms, and lead a “normal”, happy and successful life.
I am a writer in Hollywood, and I’ve written a novel based entirely on the symptoms of AS, called Unfortunately Human. I hope that we can all spread the word throughout the world about the book, so that we may raise awareness of this terrible disease and stop all the misdiagnosis and medical incompetence.
I implore everybody to stretch every joint in your body, twice a day, and always keep moving every part of your body that you can move, despite the terrible pain. We must always fight to preserve all of our movement.
Here are some links to my picture and more of my story:
California, United States of America