We all hurt in some form or fashion, but without hope the pain wins….I am hurting, but I am also hopeful!
I am a mother and wife first, and a patient with Ankylosing Spondylitis second. Even though I have AS it doesn’t have me and I am very blessed. The Lord has given me so many wonderful things in my life, so the positive definitely outweighs the negative! I have a wonderful husband, who is also my soul-mate and best friend of 13 years (we got married at 19!), and two gorgeous kids. I lost my mother to breast cancer in 2000, when she was 45. I miss her so much, and to add to the loss, both my husbands parents passed away recently as well. It is hard raising two kids, while having a disability, and while not having a large family for support. I am blessed to have my father here with us, and he is a wonderful grandfather to my babies. After I was diagnosed with Ankylosing Spondylitis I felt like I had finally found my purpose on Earth…I was meant to be an AS advocate, and I take that very seriously. I hope I can not only teach the world what living with AS is about, but I hope I can help others like me deal with the toll it takes on not only our bodies, but our souls. So with this blog, I hope you can get to know me, my goals, and more about AS. Thanks for reading, and please feel free to leave feedback, good or bad!
The Problem: Most people have never heard of ankylosing spondylitis. Unfortunately, medical professionals and researchers are no exception. This is surprising because a relatively large number of people, estimated to be between 1 to 2% of the general population, are afflicted with this disease. That means that for every 100 Facebook friends you have, odds are that one or two is a spondylitis patient. It is NOT a rare disease. Its prevalence is similar to that of rheumatoid arthritis. As of December 2009 only 23 active grants funded by the National Institutes of Health (NIH) are related to ankylosing spondylitis. This is 10 to 40 TIMES less than diseases with similar prevalence. For example, there are currently 774 grants that fund research into rheumatoid arthritis. To make matters worse, the NIH has released only one request for applications to promote research into the pathogenesis of ankylosing spondylitis since 1992.
So why is there so little interest and support for ankylosing spondylitis in the research community? We believe it is a problem of awareness. Ankylosing spondylitis is a chronic degenerative illness that deserves the attention of the research community and funding agencies. More researchers need to be recruited to the cause. Medical doctors need to be educated in the latest research findings in order to make more informed treatment decisions and more accurate diagnoses. Patients and families need to learn to cope with the lifelong impacts of this disease. We are hurting, we need to hold on to the hope that a cure may yet be found in our lifetime.
Our Strategy: We are an online community of AS patients, family members, and friends. We propose to carry out a variety of group awareness projects to help raise the level of visibility and awareness of AS in both the general public and the medical community.
The Spondylitis Association of America was founded in 1983 by people affected by ankylosing spondylitis, a crippling form of spinal arthritis that strikes young people. Prior to that time, there was no support network, no resource for educational materials, not even a single pamphlet for people diagnosed with the disease. SAA was the first and remains the largest resource in the United States for people seeking information on AS and related diseases. Our mission is to be a leader in the quest to cure AS and related diseases, and to empower those affected to live life to the fullest.
There are more than 100 types of arthritis. For over 25 years, SAA has focused on just one – yours. So that no one has to face spondylitis alone.