SAA has been extremely valuable for me. A fantastic resource for anyone effected by spondyloarthritis and related conditions. I've been a member for several years and particularly enjoy the support group/educational meetings they host. Very grateful for SAA!
SAA has kept me informed with their information on studies and up to date info. The treatment plan that I saw helped me and my doctor. I recently switched some medication due to this info. There is support from SAA and all the members.
They are great!
I have received pamphlets explaining my condition from SAof A after seeing their info to request more. I get more info by seeing what they post online/ their Facebook posts. It is often good info to share with others to help them understand my condition and what I have gone thru. It's great to have validation about what to many is an " invisible disability" that is very real and debilitating!
The SAA is the best, most ethical non profit group I have ever attended. They really help you cope with a horrible disease that most people cannot even spell or have even heard of. I learned the most by attending meetings and meeting other members. The SAA embraced me like family and is run like a family as well. I would highly recommend this nonprofit.
SAA has been a wonderful resource, offering support and materials I couldn't find anywhere else. AS is an overwhelming diagnosis. SAA helped me put my situation in perspective and take positive steps to improve it. I joined to receive the magazine and love it. I don't know how they accomplish so much with such a small staff.
After my diagnosis 17 years ago SAA was the first great website I found. It was full of information and reassurance about a disease most people had never heard of! They have stayed on the forefront of new developments and continually expand their information and support for all of us.
Since I was diagnosed with Spondyloarthritis, the Spondylitis Association of America has been a huge source of support for me. Their support group has been a lifesaver! It helps me to meet others with similar experiences, feel that I'm not alone, and get useful information on doctors, treatments, and lifestyle changes. I also appreciate SAA's Facebook posts, and the magazine Spondylitis Plus, which have both provided me with crucial information. The existence of SAA makes life much more manageable for people like me with spondylitis!
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.
Since like many with various forms of Spondylarthritis who are served by this mostly volunteer group, I got very sick years BEFORE I met the diagnostic criteria of Dr.s. So their information was hugely helpful when Dr.s used long words and talked to me about blood tests & XRays. Over the years I've been to several seminars this organization has run for patients to share information, to encourage the right kind of exercise, to answer questions. They've also been active in getting the word to first responders in our various communities how we should be intubated without damaging our vulnerable stiff necks. With only a few paid employees, this largely volunteer organization has greatly served a large group of patients and their families.
My AS journey started sixty years ago with chronic hip-back-neck pain with frequent flare-ups. For forty years the DX and treatment plan was whatever was popular in the rheumatological community at that point in time. AS was never mentioned in that forty years, and I received little or no relief. Twenty years ago I took charge, and started reading which lead me to SAA which quickly became my primary source for information.
My personal DX was AS, and my treatment plan revolved around a healthy diet, daily exercise and a positive attitude. Fifteen years ago my DX was confirmed by two rheumatologists, but my treatment plan was rejected by my doctors. To date I have never taken a RX drug for my AS and, I continue to eat a healthy diet, exercise daily and my AS mantra is "pain is certain, suffering is optional."
I am grateful to SAA with special kudos to their staff and volunteers. SAA is still my go-to source for AS information, and I wish them continued growth and success in meeting their mission statement and goals. What SAA does is making a positive difference in the lives of many people with physical and emotional pain. What better calling in life could anyone ask for?
Namaste, Russ McDonald