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.

Friday, February 8, 2013

Rare Disease 8 - Still's Disease

There are 2 distinct forms of Still's Disease

From Wikipedia:

Adult-onset Still's disease is a systemic inflammatory disease. The classic presentation is the triad of persistent high spiking fever, joint pain and a distinctive salmon-colored rash. Serum ferritin, a protein that binds iron, is elevated.

Juvenile idiopathic arthritis (JIA) (aka Juvenile Rheumatoid Arthritis JRA) is the most common form of arthritis in children and adolescents. (Juvenile in this context refers to an onset before age 16, idiopathic refers to a condition with no defined cause, and arthritis is the inflammation of the synovium of a joint.) It is an autoimmune disorder. The disease commonly occurs in children from the ages of 7 to 12, but it may occur in adolescents as old as 15 years of age, as well as in infants.
It is sometimes called "adolescent-onset Still's disease", to distinguish it from adult-onset Still's disease. However, there is some evidence that the two conditions are closely related.

From the International Still's Disease Foundation:
Still’s disease is a rare and often misunderstood disease which strikes both children and adults.
Still’s disease is a form of arthritis that is characterized by high spiking fevers and evanescent (transient) salmon-colored rash. Still’s disease was first described in children, but it is now known to occur, much less commonly, in adults (in whom it is referred to as Adult-Onset Still’s Disease).

Here is a video from Creaky Joints about what Still's Disease is and what the options are

The "cheat sheet" about Still's Disease from the National Library of Medicine is here.
Still's Disease 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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