Posted by: charityinfo | March 12, 2012

Helping Themselves

Some of us unfortunately wind up having diseases that makes life more difficult and painful to live through.  There are those who have refused to be brought down by their affliction and have take action to help themselves and others live life to the fullest.

Ankylosing spondylitis (AS) is a disease that essentially hits the spine and is a form of arthritis. There is inflammation of the spinal joints that can cause extreme, regular pain and discomfort.  The most severe case of this disease (although not applicable to all) is new bone formation on the spine causing the spine to fuse and which sometimes creates a forward –stooping posture.

There is no known cure for this disease. There are treatments to reduce symptoms and manage the pain. There are new medications that have the potential to slow or halt the advancement of AS for some individuals. The exact cause of AS is not known. Genetics does play a central role.  The environment can also have an effect.

AS can start occur to people between the ages of 17-45 but can affect even children and those much older. It’s more common in men than women.

The Spondylitis Association of America (SAA) was founded in 1983 by people affected by ankylosing spondylitis.  Before this organization was formed there wasn’t much information about this disease which can affect young people. There was no support group or educational material available about it.

Instead of lamenting about the lack of information and awareness of the disease, a group of people afflicted by it decided to help themselves and others. One of the co-founders is Jane Bruckel who is a registered nurse.  She became the first President of the Board of Directors and the first Executive Director and retired on April 2006. She led SAA for 23 years with her house being the first meeting place.

SAA has accomplished a lot in bringing awareness as well as trying to find a cure for the disease. It has held national symposiums, has created support groups, raised money for research, and initiated the extensive survey of SA patients nationwide among other accomplishments. The organization helped the Genetic Information Non-Discrimination Act (GINA) get signed into law.

Now there is more awareness and ongoing research about this disease due to SAA. The organization is about people who set about to help themselves.


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