A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Thursday, February 21, 2013

Rare Disease 21 - Stiff Person Syndrome

 From Wikipedia:

Stiff person syndrome (SPS) (or stiff-man syndrome; also known as Moersch-Woltman Condition) is a rare neurologic disorder of unknown etiology characterized by progressive rigidity and stiffness, primarily of the axial musculature, that is superimposed by spasms, resulting in postural deformities. There are also sub-variants: stiff baby syndrome and stiff limb syndrome. Other forms or types of the disease include focal SPS, jerking SPS, and progressive encephalomyelitis with rigidity and myoclonus.

One person affected shared her desire to run a 5K with the NORD blog.  She details her live with SPS on several websites, including her main webpage,  and her blog and her Facebook page.

 SPS was on the show Mystery Diagnosis:

SPS is just one of 7,000 rare diseases, most without cures and very few treatments.  Please see the rare disease facts at GlobalGenes.org and feel free to share this post with anyone and everyone.

Rare Disease Day is February 28, 2013.


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