The twists and turns of naming diseases
29 November 2015
When a new disease is identified in a group of patients it needs a name so it can be described, researched and treated. But, unlike naming a child, there is no little book of names for diseases. So how do you choose the right name for a new condition? It isn't easy. In the 1970s, Dr Graham Hughes, a rheumatologist working at London Bridge Hospital noticed that a group of his patients suffered from "sticky" blood that increased their risk of dangerous blood clots. His colleagues decided to name the condition after him, a recognition which is rare these days. "It was an honour for me," explained Dr Hughes. "Hopefully, when I kick the bucket, I'll be remembered for it." Dr Hughes now diagnoses patients with Hughes Syndrome. Fortunately, it is treatable. But what does it feel like to be named after diseases that inflict terrible pain and suffering such as Parkinson's or Alzheimer's? There was a time when the medical profession honoured its members by naming diseases after them. But more recently it has been felt that this leads to stigma and further distress. During the 19th and early 20th centuries a more systematic analysis of patients' symptoms led to the identification of new conditions, each of which needed a name. "Naming a disease after the doctor who described it was a way to assert the authority of scientific medicine," explained Dr Richard Barnett, a historian of medicine. Like many others, Dr Alois Alzheimer and Dr James Parkinson didn't choose to name diseases after themselves. Parkinson suggested the name "Paralysis agitans" but it was "Parkinson's disease" that stuck, a name suggested by neurologist Jean-Martin Charcot after Parkinson's death. This was during the "heyday" of medical eponymy - naming diseases after people - and many major diseases are now known for the person who discovered them. But times have changed, and gone is the time of the gentleman scientist or lone pioneering doctor. "Most cutting-edge research is done by large teams rather than individuals. Eponyms don't provide useful clinical information, and they don't always mean very much when they cross cultural or linguistic boundaries," said Dr Barnett. There is also greater awareness of the impact of naming a disease for a person or the group of people in whom the condition was first identified. The United States Centers for Disease Control and Prevention originally called HIV/Aids "the 4H disease" as it seemed to only affect Haitians, homosexuals, heroin users and haemophiliacs, whilst the press referred to it as Grid -  which was short for gay-related immune deficiency. Naming a condition for a place rather than people might seem like a safer choice. But not everyone is pleased about having the place they live associated with a disease. In recent years a host of potentially lethal viruses have emerged, including Middle East Respiratory Syndrome (Mers). The World Health Organization (WHO) have warned that the use of people and place names have "unintended negative impacts" which could have "serious consequences for peoples' lives and livelihoods". This is something Prof Linfa Wang, of Duke-NUS Graduate Medical School in Singapore, knows only too well. He and his team suggested they name a newly-discovered virus after the place where it was discovered - Hendra, Australia. "We thought Hendra is a small suburb of Brisbane and not too many people will know; so it's 'safe'," he explained. The name Hendra virus, was quickly accepted by the scientific community. However, there were soon rumblings of unhappiness from Hendra itself. People there believed that this name was having a negative impact on the suburb. "From time to time, I received 'angry' calls from residents and real estate agents and even journalists," said Prof Wang. In 2011, 10 years after their suburb's name was associated with the virus, residents were still trying to get the name changed. Since then, Prof Wang has named other viruses carefully, wary of how a name might offend. But others have taken a different approach to being associated with a disease. In the 1970s, Old Lyme, Connecticut, saw a large number of children and adults come down with a tick-borne disease that came to be known as Lyme disease. When Ralph Eno, an official for the town of Lyme, was asked how they felt about the association he explained: "We're actually quite proud of it." He said that people visiting the area really do worry about getting infected, but the town's residents take this in their stride. The Lyme county store sells T-shirts with pictures of ticks on, and the local youth lacrosse team is called the Ticks. "It is a serious health issue - we make light of it because we've been so close to it for so long," he said. Despite this, there can be unintended negative consequences even if the intentions behind naming diseases for a place were good. "There might be disputes over who gets the credit for discovery - and there can be political or ethical reasons why we might not want to commemorate a particular clinician," explained Dr Barnett. "Until about 15 years ago granulomatosis with polyangiitis [a rare condition that causes inflammation in blood vessels that restricts blood flow to organs] was known as 'Wegener's granulomatosis'. "But this name was dropped after it emerged that Friedrich Wegener [for who the disease was named] was a Nazi Party member who may have participated in experiments on concentration camp inmates,' he said. In an effort to combat offending people in the future, the WHO recommended in May 2015 that new human diseases be given socially acceptable names. These are names that include "generic descriptive terms" based on things such as symptoms and severity rather using the names of person or a specific location. But some suggest that this might be too politically correct and some new names might be too complex or easy to grasp. "A lot of the diseases I treat are such complicated diseases - you would need 10 words to describe them," explained Dr Hughes. It seems that a little book of socially acceptable names might be useful after all.
During the 19th and early 20th centuries a more systematic analysis of patients' symptoms led to the identification of new conditions, each of which needed a name. "Naming a disease after the doctor who described it was a way to assert the authority of scientific medicine," explained Dr Richard Barnett, a historian of medicine. Like many others, Dr Alois Alzheimer and Dr James Parkinson didn't choose to name diseases after themselves. Parkinson suggested the name "Paralysis agitans" but it was "Parkinson's disease" that stuck, a name suggested by neurologist Jean-Martin Charcot after Parkinson's death. This was during the "heyday" of medical eponymy - naming diseases after people - and many major diseases are now known for the person who discovered them. But times have changed, and gone is the time of the gentleman scientist or lone pioneering doctor. "Most cutting-edge research is done by large teams rather than individuals. Eponyms don't provide useful clinical information, and they don't always mean very much when they cross cultural or linguistic boundaries," said Dr Barnett. There is also greater awareness of the impact of naming a disease for a person or the group of people in whom the condition was first identified. The United States Centers for Disease Control and Prevention originally called HIV/Aids "the 4H disease" as it seemed to only affect Haitians, homosexuals, heroin users and haemophiliacs, whilst the press referred to it as Grid -  which was short for gay-related immune deficiency. Naming a condition for a place rather than people might seem like a safer choice. But not everyone is pleased about having the place they live associated with a disease.
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What's in a name?