By any other name would smell as sweet" from Romeo and Juliet - (Shakespeare). The meaning seems to be "What matters is what something is, not what it is called".
Something started me thinking while listening to the radio last week. There was an appeal to raise money for Motor Neuron(e) Disease. This "name" and disease seems to be well known (in Oz and UK) not only by health professional but also by the general public. The latter may not understand a great deal about the disease, but its name seems helpful in guessing the basics of the condition. Its medical name is amyotrophic lateral sclerosis (ALS), but in the USA it is frequently referred as Lou Gehrig's disease (after a great baseball player who contracted the disease).
The same awareness cannot be said of Progressive Supranuclear Palsy, although both diseases have the same rare prevalence (about 6/100,000 population), poor prognosis and no treatment.
Diseases are often named after the person (or people) who first "described" it, like Parkinson's and Alzheimer's. Rarely, there is the use of a patient's name, as in Lou Gehrig. More frequently, the terminology is after the cause or main signs, like Progressive Supranuclear Palsy. Recently, diseases have been named after genetic defects (like 1p36 deletion syndrome).
Making the health professionals and general public aware of any (incurable or difficult to treat) disease seems to be a matter of marketing, especially when it comes to finding research funds. As we've all discovered on this forum, PSP (and associated conditions) has both a very low profile and poor understanding even amongst clinicians. Without going into all the reasons for this, perhaps a change of name would be beneficial. Some may know the following….
Charles Dickens may have been first to describe a subject with classical PSP in 1857 in his novel The Lazy Tour of Two Idle Apprentices: “A chilled, slow, earthy, fixed old man. A cadaverous man of measured speech. An old man who seemed as unable to wink, as if his eyelids had been nailed to his forehead. An old man whose eyes - two spots of fire - had no more motion that [sic] if they had been connected with the back of his skull by screws driven through it, and riveted and bolted outside, among his grey hair…. He had come in and shut the door, and he now sat down. He did not bend himself to sit, as other people do, but seemed to sink bolt upright, as if in water, until the chair stopped him.”
How about raising the profile of PSP by renaming it - "the Charles Dicken's disease"? After all most people have heard of him and the curiosity would drive people to Google it on internet.
Any thoughts?
Expert interview about PSP and possible cause
Add on to my previous post.
Mom with PSP in PA & helpful book
