Generic My A.S.

This is the email I sent to Arthritis Foundation to hopefully start some brainstorming.

1st Letter (Mine)

Thank you so much for giving me the opportunity to discuss the concerns of the Ankylosing Spondylitis Community

1st Response (AF)

Thanks for contacting us. We’re always here to listen and support people in our community!

Again, thanks and you can reach me here for any questions, etc.

2nd Letter(Mine)

Thank you I appreciate it. I am curious of the reasons or whys of why Ankylosing Spondylitis doesn't receive the same amount of exposure.

I can't speak for anyone but myself, but I have my thoughts on the subject and do my best to find out whatever I can. We have many people in our community that have become hopeless, filled with desperation and many that have tried to advocate are becoming angry and frustrated which sadly results in communication opportunities being lost. I am in no way anyone of importance I assure you but I am a person who is trying to live a life of quality and make a difference in how the world views us with the hope of helping to change things.

I would greatly appreciate any communication in trying to bring more awareness to Ankylosing Spondylitis.

2nd response (AF)

Thanks again for contacting us and sharing how you feel. Our organization represents all people with arthritis, so they can receive the support and resources they need to live a full life. Here are a few ways that our community is impacting the 54+ million people with arthritis, including those with Ankylosing Spondylitis, and rheumatic diseases:

• More than 150,000 Advocates are working to eliminate barriers to care, such as addressing the high costs of treatment (including advocating for biosimilars), difficulty accessing medications, scarcity of specialists, and insurance hurtles like step-therapy and fail first that limit access to treatment.

• Local, peer-led support groups that provide connections, education and empowerment to adults with arthritis and rheumatic diseases as well as parents of kids with arthritis.

• Online forums where people exchange ideas, tips and experiences with others. (There are 46 discussion mentioning Ankylosing Spondylitis on ourforums right now.)

• A focused scientific agenda of which two key areas are increasing collaboration between patients and their doctors (you can help byparticipating in research monthly) and cultivating a new generation of rheumatologists to address the shortage.

We hope this gives you a better idea of our work and promise to support people with arthritis and rheumatic diseases (no matter which type they have).

3rd Letter (Mine)

Thank you.

My final response.

While I appreciate your response, I must admit it feels like a generic copy and paste response that no way reflects anything to do with my question and concerns. I know as we all do how much the Arthritis Foundation does for the arthritis community that was not my question, nor was its Kelly’s or Charis either.

Maybe I didn’t make my concerns clearer. Why are we not given the same amount of exposure that RA is in your magazine, pamphlets, and advertising. These advertisements are generic to be honest how difficult would it be to put Ankylosing Spondylitis in the place of RA. Both are treated with the same medicines for the most part.

This response to my questions tells me that your organization is not honestly interested or concerned to have an honest discussion about this dilemma.

I appreciate your time.

Sincerely Cookie

(I will no longer attempt to carry on this back and forth because I feel that the answer, I received was generic chatter, blah blah blah,and there wasn't any real sincerity to address our concerns, just my thoughts on this) All I can say is generic my A.S.!

I never did receive anymore responses to my questions or concerns, so I have decided I will no longer assist them in anyway. Sure makes me appreciate the SAA more!

Today I am grateful for the dedication and hard work that the Spondylitis Association of America does for us.