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The Hardest Part of Coping With Pediatric-Onset Stiff Person Syndrome

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themighty.com

There is nothing glamorous about a life with stiff person syndrome (SPS) in general, but I have noticed over the years that support is severely lacking for teens and young adults with the condition in support groups.

Some have been so traumatized by the loss of quality of life, pain, and disease before diagnosis, they refuse to even talk to other young warriors.

Others have resigned themselves to believing they are dying soon, and some are still in that seven-plus-year diagnostic limbo awaiting a diagnosis and/or effective treatment.

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