A.S. Face 1413: Ryan Haynes

Face 1413

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:

http://www.amazon.com/Ryan-Haynes/e/B00MS8PE30

http://vimeo.com/69574727


12 Responses to “A.S. Face 1413: Ryan Haynes”

  1. Dear Ryan,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. I was dx at age 25…after a spinal surgery at age 28, I ignored the diagnoses of AS.. I’m 45 and can’t ignore it anymore…

    I look forward to having a voice and reading more about you, starting with your book! God speed, your a strong man!

    Katherine

  3. Thank you, Katherine. I appreciate your kind words. Keep staying strong!
    -Ryan

  4. Ryan: I just went on Amazon and ordered your book! I have to say that your blog on this site scared me, but I am so happy to hear that you are doing a well as you can now. I can’t move my head more than 5 degrees in either direction, so driving is now a challenge! But I am thankful that I can still work, and so happy that you shared your story! I look forward to reading your book. Welcome to our AS group! Stephania #445

  5. Thank you Stephania, I appreciate it. I read your story, too. We can both definitely relate. Please continue to stretch your head and neck as far as it goes, every single day. You can regain your movement, and preserve it. Keep staying strong

  6. Hi Ryan – I’ve just read your book – what a great thing. I’ll be writing a review of it on my blog but if possible I would love to also ask you some questions about it. Let me know if that would be ok and best way to contact you – here’s a link to one of my posts on AS by way of credentials:

    https://sallybaxter.wordpress.com/2015/06/07/the-highs-and-lows-of-living-with-an-immune-disorder/

  7. […] Ryan Haynes contributed to the Faces of AS project which documents personal experiences of the condition. He was Face 1413. […]

  8. Ryan, I have just ordered your book. I was diagnosed at age 23 when the crippling hip pain began. It has moved on now to my Achilles tendons, ribs, chest and upper back. I cannot take aspirin, so I too am left to fight this without medication. I fight the best way I can through the pain and fatigue. I have always worked full time and will continue to do so as long as I can. I’m afraid that if I stop, I will never move again. Thank you for sharing your story. There are so few people in this world that we can talk to and receive understanding.

    • Thank you Faith, I appreciate it. Sorry I just saw this, and I’m so sorry to hear about your condition. Definitely keep stretching everyday, we can’t afford to stop moving. You can always contact me here: therealryanhaynes@gmail.com

  9. […] Ryan Haynes contributed to the Faces of AS project which documents personal experiences of the condition. He was Face 1413. […]

  10. […] Ryan Haynes contributed to the Faces of AS project which documents personal experiences of the condition. He was Face 1413. […]

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