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Jo K.

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SPONDYLITIS ASSOCIATION OF AMERICA
September 3, 2013

I have spondyloarthritis and Ehler's Danlos(EDS) Hypermobility. I was diagnosed with Ehler's Danlos in January 2013 (after years of pain) and spondyloarthritis (for sure Axial spondyloarthritis (AxSpA)) with possible ankylosing spondylitis June 2013. While I have been getting worse for a number of years, this past year progression has been more rapid. I am grateful to find a rheumatologist that does listened and realized EDS/hypermobility does not explain all my symptoms and to make matters worse, I do not know much family history (and cannot obtain). Once diagnosed with spondyloarthritis, I had never heard of it an was directed by rhuematologist to rheumatology.org to for more information. This gave me little information, and I was thrilled to find SPONDYLITIS ASSOCIATION OF AMERICA, it provided so much information! Once I showed my husband he said join, they are helpful. This is significant considering our current financial issues (I have been out due to pain, & orthostatic intolerance since June, my husband is looking for work but laid off 10 months ago. We try to conserve money as much as possible as we are broaching bankruptcy, foreclosure, & looking medical insurance; yet both agree information obtained from SPONDYLITIS ASSOCIATION OF AMERICA: made cost of joining invaluable. Thank you for helping me understand spondylitis & not feeling alone.

Ways to make it better...

If I had to make changes to this organization, I would...

change nothing

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

MY ROLE:
Client Served