Ankylosing Spondylitis

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  I have an idea: An annual/biannual "convention" of sorts, for those with AS. We could also create an AS Foundation, or AS Fund, which would be able to raise money for those with extreme cases, and in need of money for proper medical care. I am not aware of such a thing existing, are you? I think this NEEDS to be done.

  People suffering from Progeria, cancer survivors, and myriad other conditions/diseases, all seem to have a gathering of sorts about once a year. Anyone willing to collaborate with me, and willing to spend the time necessary time, is more than welcome to help me. I have never attempted anything like this, so a partner with experience would be greatly appreciated.
  
  I am sure we would need people knowledgeable about things such as: Marketing, philanthropic charities, non-profit organizations, etc.. You get the idea.
  
  I live in Omaha, Nebraska, and I think the geographic location of this city, lends itself to being more accessible to those unable to travel long distances. Omaha is not a huge city, but there is more to do here than most people realize.
  
  We could hold this event at the Centurylink Center.
  http://www.centurylinkcenteromaha.com/ConventionCenter/ConventionCenterHome.aspx
  
  I am looking forward to your feedback.

  Answered by Robert Dudash - 11 months ago

   

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  A request for the mods: Would it possible to enable commenting on comments? Something similar to how reddit.com is operated. There is a subreddit for AS, but it gets no traffic. In all honesty, I find *this* community to be far more supportive of one another. I think a Reddit-esque system of commenting would lend itself to deeper conversations, more advantageous sharing of ideas, and supporting each other in our struggles. --- Just a thought.

  Asked by Robert Dudash - 1 year ago support community interaction

   

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  Lifting does radically affect your spine! How can they ask you this, Joanne, when you are disabled. Pressure on the spine is what causes spinal compression and all the baggage that goes with it. A compressed spine is bad for the circulation and nerves from the waist downwards and makes you feel ill everywhere else!

  I hope you get sorted,  large amounts of information out there are designed to be as positive as possible, and true a percentage will continue to work full time in demanding jobs, for me I worked very hard 4 nights a week loading up to 3000  sheets of paper and card a night into a huge machine for laminating for many years 14 years straight with previous employer.
  
  However these days I look back and cannot imagine coping with the travel to work I used to make daily let alone stand for more than 5 minutes, 5 hours would put me in hosp for pain control
  
  If you can manage all of this then fantastic, but do not hurt yourself trying to do more than you are able to manage, severity will vary person to person, some like me cannot carry bags of shopping, that once worked very hard and very active, others continue to run  for miles apparently, if in doubt ask GP for work assessment or occupational health referral if you are struggling, help is out there just need to ask the right person
  
  Terence

  Answered by Mr Terence King - 1 year ago