My Nonprofit Reviews
Review for Spondylitis Association of America, Sherman Oaks, CA, USA
When I was diagnosed in 2007 I had no idea what Ankylosing Spondylitis was. I had never heard of it and was scared to say the least. I started searching for information and thankfully I found SAA. They provided up to date info which I couldn't find anywhere else. I also found support from people who understand how I was feeling. I've read everything they've put out since and will continue to support SAA. Thank you for all you do!
I've personally experienced the results of this organization in...
You provided the medical information I needed to show my doctors other things I was experiencing were related to AS. It could have saved my life when it came to my heart problems. Not to mention you give me some sanity knowing "it's not all in my head".
If I had to make changes to this organization, I would...
Produce some patient to patient symptoms list. I know it's on the message boards but I think if we could get a short list out there it could help a lot I see asking the same questions over and over. Also many of us our pushing for exercise in AS'ers and we'd love to have some tracking forms for this. Showing it's ok to feel some pain and the ways you see your body responding to the exercise for encouragement. I see other arthritis sights have these but they don't always cross over to AS easily.
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
When was your last experience with this nonprofit?
How did you find this group?
What, if any, change in your life has this group encouraged?
Me to realize the docs may have best interest at heart but they don't know a lot when it comes to AS. I need to be my own advocate and they help me gain the knowledge I need to do this.