The SAA is a World Class organization, run by a remarkable, dedicated, and brilliant leadership team. I will forever be indebted to this amazing organization and the phenomenal individuals who work so hard everyday to advocate and improve the lives of spondyloarthritis patients.
In 2009 I had my first case of Uveitis and tested positive for HLA-B27. Since 1999 I had been riddled with chronic joint pain, "phantom" illnesses which included gut problems, not being able to walk some days, swollen fingers and crippling fatigue. Finding the Spondylitis Association of America was like Manna. I finally had access to all the medical information I needed and an amazing support group of professionals and peers who were also experiencing so much of the frustration of having an undiagnosed condition. I was quickly fully diagnosed through Doctors recommended through the network, was able to manage my physical condition through exercise and treatment recommended through the SAA. I often wonder what my life and health would look like if the SAA didn't exist. This is a beautiful and truly altruistic organization.
SAA is passionate about spondylitis research, advocacy, and education - and they're the only non-profit out there dedicated specifically to spondylitis. Ive been a member for many years; my father and uncle both had Ankylosing Spondylitis, and now I do, too. I am so thankful this non-profit exists!
SAA has been a life saver for me after my diagnosis with AS three years ago. I came into my first meeting a shell of a human being after having suffered months of constant soul crushing pain before doctors finally figured out what was going on in my body. I found a community of people that were willing to listen, share their own experiences and offer support. Like so many things in life, there is strength in knowing you are not alone. Since then, I have learned that SAA is the foremost expert on a disease that is still widely misunderstood, even within the medical community. The disease can present itself very differently from one person to another and it is great to have a group to go to with questions about how it's affecting you. Odds are that someone has experienced a similar symptom or found success with a certain treatment. If you have a question that is harder to answer, SAA is willing to do the work to look for answers.
Through a lot of rehabilitation and recovery, I am now feeling great and in the best shape of my life, but still enjoy going to meetings to see the friends I have made and be there for others who need support.
I have been diagnosed AS here in Italy but wasn't given many information, especially as far as the entheropatic form is concerned.
The SAA website was a happy discovery and I decided to become a member, not only to support it but also to keep updated with the latest discoveries. I love the webinars.
I absolutely love the SAA. They have been such an amazing resource and source of support for my family and I during this very challenging adjustment to life with Ankylosing Spondylitis.
When I was diagnosed with ankylosing spondylitis I knew nothing about what I was facing. The sources that I found on th Internet was more scary than helpful, some with bad information. SAA filled the information gap left by my doctor for me with scientifically grounded info, videos, and newsletters. My favorite part was their collection of stories. Whenever I feel alone in this fight, I go back to the stories and know that I have a team behind me.
They have given me valuable information about my illness.
When I was diagnosed with Spondylitis, the Spondylitis Association of America was my go-to spot to learn more. I refer to their website frequently, subscribe to their Spondylitis Plus magazine, and participate in their online support forums. Their staff is always friendly and helpful. They support research and have made a real difference in people's lives.
When I was diagnosed with ankylosing spondylitis in 1990, I felt totally alone. My brother also had it, but he lived in another state. I met a fellow AS sufferer at an Arthritis Foundation aquatics center. She gave me old copies of the Spondylitis Association's newsletter. I will be forever grateful to her. I joined the association that year and have been a member ever since. I have attended SAA educational forums in two states, attended support group meetings, participated in the online message board, and promoted SAA at health fairs in my state where I also represent the Arthritis Foundation. One of the most important ways the SAA has helped me was by printing an article in its newsletter by a rheumatologist in my home state. When I moved back home, I looked up that rheumatologist's office, and even though he had retired, I was able to find my new rheumatologist at his old office. That doctor is still my rheumatologist 13 years later. I know that I can count on the SAA to put the money it receives to good use: investing in research, sponsoring educational forums, and providing the information AS patients and their families need to know.
When I first started becoming symptomatic, it was very difficult the the medical community to diagnose me. I went to several different doctors, then to specialists. Finally, with a preliminary diagnosis from the Mayo Clinic, then confirmation from UCSF, I had some homework to do. There was only one place that clearly explained to me what I was dealing with and provided needed resources, knowledge and connections with others who suffer this debilitating disease. That would be the Spondylitis Association of America. Not only was I able to educated myself about this disease, but also was able to direct members of the medical community to the Spondylitis Association of America. It's wonderful to know that this resource is out there for me and others. I'd be lost without it. I just wish the public at large were more aware. Explaining it is sometimes a bit overwhelming.
When I first first diagnosed with AS, this was the first place I went to for information (as suggested by my doctor, who is one of the foremost authorities on the subject). I was completely lost and really felt quite "alone", even though I have an amazing support system and the availability of superb medical care. I gained a great deal of extremely helpful information Spondylitis Association of America. Their continued support and up-to-date information on latest treatments, etc. is invaluable. i would likely be much more in the dark and alone had it not been for this association. I also have been able to share and support other sufferers through this association. It's reassuring to know that we are not alone, and that there are PEOPLE in an organization who really care. Thank you to all of the people of Spondylitis Association of America.