SSF Members Take Action on Social Security Disability

SSF members rallied to make a difference for Sjögren’s patients seeking disability benefits. Members submitted comments to the Social Security Administration requesting better inclusion of Sjögren’s syndrome in disability guidelines and serious attention to proposed changes submitted by SSF’s Medical and Scientific Advisory Board (MSAB).

By the close of the public comment period on July 8, 2003, Sjögren’s syndrome patients had posted 29 comments on the Social Security Administration's website describing the devastating impact of their disease. They relayed their personal stories and described debilitating symptoms that can interfere with a patient’s ability to work. "Please help us" became a common cry, or, as one patient eloquently stated, "Please read every one of these posts and listen with your heart and make some changes for the better."

The Sjögren’s Syndrome Foundation hand-delivered its recommended changes, which were drafted by the foundation through a Working Group of the Medical and Scientific Advisory Board. Comments focused on the immune system, special senses including vision and oral cavity, and the following areas as outlined in specific sections: respiratory, digestive, hemic and lymphatic, endocrine, and neurological systems.

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