The staff and volunteers of SAA are very knowledgeable about AS and are passionate about providing as much detailed educational information as possible. Their web site is an amazing resource as are their great volunteer support group leaders. I'm continually impressed by the compassion and caring of this organization. SAA is clearly very dedicated in it's quest to help find a cure for AS.
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 is spearheading critical research in ankylosong Spondylitis and the related auto immune diseases. SAA also helps support the individual support groups around the country.
I've had AS for 35 years and only discovered the group a few years ago. Since them they have helped so much plus now I know there are others out there, it's not just me. Now,with there help I distribute information when asked. A lot of people would be completely alone without SAA.
Spondylitis of America is an exemplary non-profit striving to find a cure for persons suffering from ankylosingspondilitis and other related diseases. I proudly serve on the board of directors for Spondylitis of Ameica and strongly support our mission.
I have had AS for 48 years and when the Spondylitis Association of America began we who have this disease started seeing progress toward better management of the disease and its many ramifications. The research has been fruitful and continues to give us more than just hope; it gives us tangible paths to a better, more productive life.
Below is a pasted email I sent to The SAA Philadelphia Support group...a few years ago.
(I am the SAA group leader)
I have the disease for 47 years...
I was formally diagnosed 24 years ago...I then joined SAA.
SAA is the #2 contributor to my success with my disease...
(I am #1...my attitude and determination)
To let the disease control you.
you control your disease.
(that’s the easy part)
(I am sharing this with the whole group)
I have been thinking about your email, your childhood, your disease.
I hope feedback from the group has been helpful.
A question occurred to me......Does a traumatic childhood contribute to an early onset/trigger of the disease?
...and something that we carry though adulthood?
I am asking the group to look at themselves, their offspring or other family members.
Is there a potential truth to this thought?
In the past, I have asked the group to look at themselves and note if there was an event in their life that preceded their onset of the disease.
I would say ~half of the group remembers a trauma (e.g.: fall/injury) or a bacteria type event (usually gastro-intestinal) prior to the initial onset of the disease.
I looked at myself, looked at the words that described your childhood.
We both experienced onset of symptoms in our younger years.
(I assume you know that psoriasis is a symptom)
My childhood (like yours)...not normal....
Two orphanages, five grade schools...the streets of Chicago.
I remember sleeping in $1/night flop houses...in the back seat of a car.
(I taught myself to read...from reading comic books)
My childhood was memorable...(contributed to who I am now...)
I consider myself very fortunate....I know people who have survived worse....
Stress is one the triggers for symptoms.
Could an unconventional childhood, abnormal stress contribute to the early onset of the disease????
Playing the cards you are dealt.
It’s not about the quality of the cards you are dealt..
it’s about how good of a card player you are....
If you are a member of the SAA Philly support group....
I feel comfortable in saying you have been dealt a below average hand.
(in terms of health)
SAA and this group is an opportunity for you to discover if you have the ability to become an above average card player.
Some of you know this of me....
I have been fighting my disease 47+ years.
I consider myself successful.
I consider myself fortunate.
I consider myself an above average card player.
My symptoms (over 47 years);
-Sacroiliitis – Gone (the pain part)
-Crohn’s – Gone
-Heart valve – Gone (I am still trying to figure out how I reversed that one :-)
-Tendinitis – Gone (thank you Mary for turning me towards emulsified Vitamin D...Nicole isn't Vitamin D grand? )
-Uveitis - Gone (I know my trigger...and avoid it)
-Fusion, spine – work in progress .... My sacroiliac joint – fused. Middle/upper back/neck...will not allow it to fuse.
-Fusion – rib cage....work in progress, will not allow it to fuse.
-Diabetes – work in progress (I am normal based on behavior changes diet/exercise.... I have learned having Spondylitis increases probability of acquiring this disease)(from SAA)
-Asthma – Gone....I have learned having Spondylitis increases probability of acquiring this symptom.
(Diabetes and asthma symptoms acquired early fifties)
-Joints - symptom free (pain/symptoms gone or minimized...do not know if it’s exercise, supplements or diet changes...or all the above)
I am med free.
I have an attitude.
One can enjoy an interesting and productive life and still have spondylitis.
(for me it’s a lifetime pursuit)
Spondylitis Association is a go to site for anyone needing up to date information on Spondylitis! I am the Spondylitis support Group Leader in our area and find this site extremely helpful as well as the entire association!
I often send people to this site if they have symptoms of spondylitis but aren't even sure about their condition.
I have been a member of the Spondylitis Association of America for 20 years. The SAA is the most accurate source of current information regarding the diagnosis and treatment of A.S. and other types of spondyloarthritis. There website has a wonderful catalogue of past issues of the quarterly news magazine "Spondylitis Plus". The SAA also provides support groups in many areas of the country. Finally there is a wide selection of literature available on line along with many webinars.
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.
When I was diagnosed with Ankylosing Spondylitis in 2013 I faced a dearth of information I felt I could trust. I was skeptical of my doctors as well as what I could find online from resources that were supposed to be accurate but weren't. Then I found the Spondylitis Association of America. The staff and the website were and are easy to trust and navigate, and I know that the resources and information were and are reputable and up-to-date. I have even become friends with some of the staff through the years. I refer people to the SAA website all the time through my blog (www.beingcharis.com) and individually. I am also a volunteer support group leader (one of many SpA support groups sponsored by SAA across the USA) for people with spondyloarthritis and am proud to represent the organization in that small way. The SAA seems to balance a tricky mixture of good relationships with patients, researchers, pharmaceutical companies, and more with grace. I can't imagine living with Ankylosing Spondylitis and not having the SAA to turn to for advice, research reports, seminars, opportunities to engage, support for patients like me, and trusted current news and information.
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 am so grateful to this organization. My journey with psoriatic arthritis/spondyloarthritis started 4 years ago. The Spondylitis Association website has been and still is my go-to source for information beginning with my diagnosis and continuing through various treatments. It publishes the most informative educational blogs and articles, works with the best doctors, specialists and researchers, and offers webinars with doctors updating members on the latest information available. I wish I could support this organization with more than my small donations, because they have helped me so much.
SAA has been a great resource for me since finding out about their organization in early 2007.
I suffer from AS and up until I found them, most people didn't know or care about AS, including many people in the health profession. For years I was misdiagnosed until I finally went and saw a rheumatologist in 1995 and got confirmation from the Mayo clinic that I had AS. Back then, the treatments were not nearly as advanced until several of these new biologic injections became available. I started on Enbrel in early 2007 and the relief was immediate but the cost was very high even with my health insurance and deductible. It was SAA that unlocked the opportunity to be able to purchase on a copay program, which drastically reduced my out of pocket cost. Since that time, I had to change medications and I've been on Humira now for 8 years. These drugs were life changing for me and I only have mild AS, unlike many others who have a chronic case of it. The SAA newsletters and emails have helped to provide me much information on AS that offer me support in my continual battle with the disease. I encourage anyone dealing with AS or many of the other inflammatory disorders that are in the same family to utilize SAA as their resource in dealing with these diseases. Thank you SAA!
I am 57 years old, I've had AS for more than 20 years. Please help this cause. Many suffering people go undiagnosed for years just like I did. I still suffer with disabling pain but someday they will find a cure. Now, I have HOPE !!!
My mother has AS, and SAA has been a fantastic resource for us these past few years. There's so little out there for patients and caregivers, but this resource is great quality and I would recommend it to anyone affected by AS. Thank you SAA!
I have RA and SpA , this organization has helped so much.When I was first diagnosed, I knew so little about the diseases, thanks to SAA, I am better informed and therefore better able to cope.
SAA is a bunch of whiners who listen to the medical profession's prescriptive bs, while ignoring the causes of AS, and the only natural solution... elimination of starch in the diet.
When my son was diagnosed with AS I wanted to get all the information I could. The web site is a great source of useful information; and it has links to support groups, doctors, written material, and seminars. As a parent, and advocate I'm grateful for all the knowledge I've gained. And I know any donations made go where they can do the most good.