They have worked closely with me to start my state's first support group. I have absolutely loved every aspect of working with this organization. They have by far the most accurate knowledge of any other source and they have a strong dedication to raising awareness.
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.
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.
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 !!!
When my doctor told me that I probably has AS, I was mystified as to what that meant. All the information that I initially found told me that I would eventually turn into a bent over, stiff-spined, disabled victim. I am so grateful to SAA for all the current, thorough information that they offer. From their educational articles I learned that this didn't have to be my fate, and from their discussion forums, I got my questions answered by others with the same experiences that I had. The support and valuable conversations I have had there have changed my life, and now, 10 years later I am able to offer words of support to others. SAA is the best!
I absolutely LOVE the SAA. When I was first diagnosed I didn't know what A.S. was and had no one to talk to. I immediately found them on line, received support and signed up to help in any way I can.
I still check the forum page and learn new things each day about A.S. and related diseases.
They are ALWAYS willing to answer calls and emails too.
I am 70 years old, and had my first AS symptoms at age 17. I was not correctly diagnosed until the age of 30. When I discovered SAA years later, it became a valuable resource. It provided up-to-date information, opportunities to link to others with AS, and opportunities to get involved in the quest for better treatments and hopefully a future cure. I am most excited about their support for research which gives me a chance to volunteer as a research subject. Major advancements in understanding AS are being made. New and improved medication options are available. If these options had been available earlier, I would not have to look at the ground when I walk because of my almost totally fused neck and spine. These options, however, have been vital in helping me continuine to lead an active and wonderful life with much less pain than I had 20 years ago. My use of pain medications is almost nil. It is the least in the past 50 years. I hope this trend continues. With the wonderful work our association, SAA, is doing , I am hopeful for a better future for all AS- afflicted individuals. Marvin Veselka, Austin, Texas
SAA has webinars giving me the latest information on research into spondylitis.
The SAA represents the voice of individuals with A.S. in the United States. Their website provides the most accurate source of medical information on the internet. Webinars and Seminars allow the membership to both learn more about their disease and ask pertinent questions related to their personal needs. Support groups have been established in many areas of our country. They provide much needed interaction between individuals and families dealing with spondyloarthritis issues.
Five years ago I was diagnosed with Ankylosing Spondylitis and within a month joined SAA. I needed information, from definitions of "new" termonology, names of the current medictions available, the enormous research facts accurately presented, and I needed everything fast. They are there to help.
The SAA website quickly became my primary source for AS. As a volunteer for the charity for the last four years my respect and appreciation for SAA continues to grow. The educational materials available to the members (from podcasts, web presentations, free seminars, free support group meetings, and countless informative articles), allows us to empower ourselves. Its' richly dynamic and informative website allows me and countless other AS sufferers to be proactive in our lives. There is not any charity for AS that provides as much as SAA does to the members, volunteers and public. They stay true to their mission, they respect those diagnosed with Spondylitis and become a real friend by helping patients, physicians, caregivers and family members.
The Spondylitis Associaion of America is the best charity I have ever been privileged to know of and be associated with.
I've been a member of the SAA since the late 1980's. As a volunteer, I have known and worked side by side with many of the fine folks there, and have to say the Spondylitis Association is, hands down, the best and most trusted source of accurate information about Spondylitis and its related diseases that you can find anywhere online. Their support groups are a Godsend for so many people struggling with this disease. Their free seminars help people with AS learn how to better cope with this often devastating disease. And if that weren't enough, the SAA has been involved in every major advance in Spondylitis research over the last twenty-five years. The question is; Why would anyone with Ankylosing Spondylitis or one of its related diseases NOT become a member of this remarkable organization?
I was diagnosed with AS in 1985. Then, as now, the only organization focused exclusively on Spondylitis and its related diseases was the Spondylitis Association of America. I have watched it grow as an organization for over 25 years, and am extremely proud to be a member. Their website is the gold standard for accurate, detailed Spondylitis information on the internet. In addition, the SAA has been involved in every major advance in Spondylitis research for the last quarter century. The staff, from Executive Director, Laurie Savage on down, are all excellent at their jobs, compassionate and well-versed in the intricacies of the disease. Their free educational patient seminars are a blessing, especially for the newly diagnosed, who often struggle to cope with this devastating disease. And finally, the SAA has been awarded a four star rating (their highest rating) from Charity Navigator. one of the most respected evaluators of non-profit organizations.
I support them with every bit of effort I can muster and with every breath I take.
My name is Jennifer Visscher and I have a disease called Ankylosing Spondylitis. The Spondylitis Association of America was the first place I turned when I received my diagnosis many years ago. The SAA is a resource for information, community forums, and research for a cure. The people at the SAA are dedicated and passionate about spreading awareness, hope, and the message that we can all "stand tall" in finding a way through our difficult chronic illness.
I was so moved to help the SAA with the work that they do that I started volunteering my time speaking up and speaking out about Ankylosing Spondylitis and they have embraced me and my efforts. For that I am extremely grateful. This is an organization to be proud to be associated with doing great work for their constituents every day.
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