A.S. Face 0241: Rob

So many beautiful people with such an “UGLY” disease. The more I read each story behind the faces, the more I feel the fight each one of us shares, and though sad, it’s comforting to know the support gets stronger as the numbers grow. My story, like so many others, has been a life long battle of pain and fatigue and not knowing why. In 1999 at the age of 35, blood tests came back with the A.S. gene HLA-B27. Wow, then came the fun of trying to explain that one to friends and relatives, it was hard enough just pronouncing the word ! But my goal from there was to learn how to live with “it”,now at the age of 48, and after too many years of medications, I try not taking anything if I can help it. Physical therapy (stretching exercises), and laughter have been the best medicine for me, I’ve even done thia chi and found that to be helpful. I’m leaving so much of my story out, mainly because it would  take too much typing to include all the complications A.S. has caused throughout my life, but I want to thankyou Cookie for all your efforts in starting this support group bringing together so many faces for a disease too many have yet to learn about .

Southeast Alaska United States of America


11 Responses to “A.S. Face 0241: Rob”

  1. Hi Rob 🙂 I totally understand where you’re coming from on telling the “whole” story. I tried and tried and it just seemed to be sooo hard to put down all the years I’ve been dealing with this and what I have felt and all the medications I’ve been on. I, too try not to take anything. I truly believe laughter is the best medicine and a good attitude is also always a plus. Thank you for sharing.
    Marti (face 199)

  2. Well said! Be cautious, without the right medications the AS can progress VERY quickly.

    Thanks!

  3. Appreciate it Jacquie !

  4. Thanks for sharing!!

  5. Dear Rob,
    Thank you so much for sharing your story. I left a lot out of mine also and it still ended up being a novel. I agree with so many things that you said. I wish you the best. Thank you for helping me fulfill my vision in raising awareness, couldn’t do it without the help of these amazing and courageous people!
    Sincerely Cookie

    • Thanks again Cookie, had a hard few days, “the attack period”, and was comforting to turn to the web page and see so many real people in the same fight. There are too few, who don’t have the disease, that even know the term exists. Those closest to us have a hard time understanding the severe affect it has on us. Faces of A.S. is a great way of bringing awareness to it and bringing together a support of people against, what can be, a damn lonely battle ! Bess you and everyone with A.S.

  6. Happy wife of 16 years and mom of five lovely darlings. I am doing all I can to savor every moment and learn new rhythems in life amidst AS. Diagnosed a little over a year ago, I am so thankful to have found a little support. It is a lonely journey. Thank you…

  7. hey rob. i just saw your message on my apage and had to check out yours. Such a great island isnt it?

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