Wednesday, January 23, 2013

Panel recommends changing name of common disorder in women

NIH News posted this release today which describes a specially-convened NIH panel to change the "name of a common hormone disorder in women, polycystic ovary syndrome (PCOS)".  You see, the disease name "PCOS" does not properly reflect the nature of the disease, causing confusion in the healthcare community, and impeding progress in understanding and treating women who have this disease.  To many (without the disease, of course), this may seem trivial, but it's not.  An improperly named disease simply reflects confoundment on the part of the medical community about disease etiology and pathogenesis, and such a problem all too often ends up in inadequate patient care. 

A different example of an improperly named disease is "rheumatoid arthritis".  As my friend Kelly Young has mentioned on her RA Warrior blog many times, "this is not your grandmother's arthritis".  It has little to do with osteoarthritis, which affects many older people, and far more to do with systemic autoimmune disease leading to the destruction of many body systems.  I've posted before about RA on this blog (largely RA genetics; see archives), but my goal here instead is to inform the greater healthcare community of progress in addressing the nomenclature problem that has stymied individuals (largely women) with RA. 

Toward this end, yesterday the rheumatoid patient foundation (RPF) provided a press release announcing the "first awareness day for rheumatoid arthritis"February 2nd was established as "Rheumatoid Awareness Day".  You can read more about the rationale behind the choice of this particular day at Kelly's blog post.  In the respective RPF banner, please note the missing word "arthritis"; that was on purpose.  The key point is to create better awareness in the healthcare community that rheumatoid disease (like PCOS mentioned above) has been inadequately addressed by the medical establishment, and a misnomer disease name is simply a reflection of this inadequacy.  To obtain proper healthcare, the rheumatoid disease patient community has banded together around the RPF, and now the establishment of Rheumatoid Awareness Day is an official step toward the goal of achieving necessary recognition similarly to what the PCOS disease community has accomplished.  Perhaps the sorely-needed official name change for rheumatoid arthritis is just around the corner.  

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