On Name-dropping
By Rick Rader, MD, FAAIDD, FAADM, Editor-in-chief, Helen Journal
Name-dropping typically describes the casual mention of famous people to impress others. For example, “Taylor Swift’s former dog groomer used to be a Girl Scout with my aunt’s best friend.”
In medicine, “name-dropping,” and “disease naming” have had a long history. But, as folk singer Bob Dylan was fond of saying, “The times they are a changing.” Yes, that Bob Dylan, who would have gone to the same high school as my brother-in-law but decided to quit school instead.
We’re glad you’re reading Helen Journal, a magazine inspired by a woman named Helen. There are, and have been, many eponymous publications. Eponymous is a good word to know for crosswords or Scrabble; it means a person giving their name to something. There have been magazines named Oprah, George, Nicole, Dolly, Jane, Martha, Victoria and, of course, my favorite, Range Rick.
“The test for whether or not you can hold a job should not be the arrangement of your chromosomes.”
Of course, magazines aren’t the only thing that are named after people. Those of us who are tuned into medicine most probably have heard of common conditions named Alzheimer’s disease, Crohn’s disease, Parkinson’s disease, Touretter’s syndrome, Asperger’s syndrome and hundreds of other eponymous disorders. But it’s probably a good bet that you are unfamiliar with Kimura’s disease, Chediak-Higaski syndrome, Dejerine-Sottas disease, Kikuchi-Fujimoto disease or Capgras syndrome.
Eponymous diseases are typically named after the doctor who first described the condition, as in all the names above. But they may also be named after the patient as in Achilles tendonitis or Lou Gehrig’s disease.
As a medical history nerd, I am fond of those conditions that have been named after fictional characters. If you are familiar with the characters, you can guess, with a high degree of accuracy, how they present their novel signs and symptoms. If we make enough ward rounds we may encounter Rapunzel syndrome, Othello syndrome, Lady Windermere syndrome, Peter Pan syndrome, Mowgli syndrome, Cinderella’s syndrome, Huckleberry Finn’s syndrome, Dorian Gray syndrome and Alice in Wonderland syndrome.
Both the American Medical Association and the World Health Organization have suggested that we retire the use of possessive eponyms.
Dr. Jessica Mason, writing in the journal EM Resident, opines, “If you want to geek out even further, naming a disease based on a location (e.g. Lyme disease named after Lyme Connecticut) is actually a toponym, not an eponym (a highly encouraged icebreaker for your next cocktail party.)” For purposes of not connecting countries or ethnic groups with negative stereotypes (China virus, Asian flu, Ebola virus), the medical community is working to drop those references.
Possessive eponyms suggest that someone owns a disease. The National Down Syndrome Society made a push to shift terminology from Down’s syndrome to Down syndrome, since the syndrome does not belong to anyone. If the name of a disease or syndrome should rightfully belong to anyone, it would be the patient, not the discoverer. Our colleagues in the United Kingdom refer to Trisomy 21 as “Down’s syndrome.”
Some of the arguments for “name-dropping” are how it can be confusing and inefficient in a literature search. Over the years, we have also discovered that some of the physicians we have celebrated by attributing their names to diseases were immoral, dishonorable and, during World War 2, involved with Nazi human experimentation and genocide. Examples of these disgraced physicians include Hans Asperger (Asperger’s syndrome), Yusuf Ibrahim (Beck-Ibrahim disease), Julius Hallervorder, Hugo Spatz (Hallervorden-Spatz disease,) Friedrich Wegener (Wegener’s granulomatosis), Hans Conrad Reiter (Reiter’s syndrome) and others. Protocols now call for renaming the disorders after the pathological mechanism of the diseases. As we know, old habits run deep, and it takes decades and several generations to discard traditional practices, even when they are justified.
Eponyms can be influenced by politics, language, protocols or timing, not based on scientific achievements. Eponyms can be confusing when multiple diseases are named after the same physician. Naming a condition after a single individual can be unfair to the many others who contributed to its discovery and description.
Physicians have long argued that it is often easier to remember a disease by its eponym than by the more scientific pathological description. Let’s look at Hodgkins’s disease (by the way it was named after Dr. Thomas Hodgkin a 19th century pathologist who was one of the first clinicians to use the newly invented stethoscope to listen to patient’s hearts). Which name is better known, Hodgkin’s disease or any of its five types (nodular sclerosing, mixed cellularity, lymphocyte depleted, lymphocyte rich, and nodular lymphocytic-predominant). A no-brainer for sure (and thanks to Ferguson and Thomas in the Journal of Community Hosp Intern Med Perspect, 2014 for helping to make that point).
Welcome to October in HELEN Journal. October was first designated as National Down syndrome Awareness Month in the 1980’s and has been recognized every October since. There are an estimated 400,000 individuals with Down syndrome in the United States.
While we celebrate the inclusion and recognition of each and every one as valued members of our community, we should also give some credit to the physician who recognized individuals with their shared genetic condition, Dr. John Langdon Down. In this issue we are sharing an article that portrays Dr. Down beyond his observations and descriptions; but we want all our physicians to be compassionate, empathetic and advocates for equity and health justice. It’s Down beyond the syndrome.
In somewhat of a poetic conclusion, we should pay homage to the triplicated 21st chromosome. If it wasn’t for that phenomenon, we wouldn’t have the poets, singers, athletes, brothers, sisters, children, actors, musicians, colleagues, entrepreneurs, students, teachers, self-advocates, friends, neighbors, co-workers, authors, artists, cooks, florists, food severs, greeters, factory workers and spokespeople that define, constitute and cultivate a true community.
Thirty-eight percent of Americans know someone with Down syndrome. Sixty-two percent are missing out and HELEN Journal urges them to reach out and embrace their awaiting gifts.