Health | Disease | Why Is It So Complicated To Name a Disease? Sciences

When a new disease is identified in a group of patients, a name is needed so that it can be described, investigated and treated. But, choosing the right name for a new condition is not easy.

In the 1970s, Dr. Graham Hughes, a rheumatologist who worked at London's Bridge Hospital, noted that a group of his patients had "sticky" blood and that it increased the risk of dangerous blood clots.

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His colleagues decided to use his name to name the condition, an acknowledgment that is rare these days.

"It was an honor for me," Hughes said. "Hopefully, when I stretch my leg, I will be remembered for that."

Hughes syndrome, fortunately, is treatable. But what does it feel when they give your name to diseases that inflict terrible pain and suffering such as parkinson's or Alzheimer's?

What's in a name

There was a time when the medical profession honored its members by giving their names to diseases. But at some point he began to worry that this could lead to stigma and distressing situations.

"Personally, I'm glad I'm not Mr. Creutzfeldt," Kazuaki Miyagishima, today director of the Department of Food Security and Zoonoses at the World Health Organization (WHO), told The New Yorker in 2015.

He was referring to Creutzfeldt-Jakob disease, a degenerative brain disorder. Having that name, he said, might require a lot of explanation, like: “There is no one suffering from the disease in my family. You will not take that risk if you marry me. ”

James Parkinson described the characteristic gait and tremor of the disease that bears his name in his 'Trial on agitating paralysis' in 1817. (Photo: Pixabay)

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.

Like many others, Dr. Alois Alzheimer and Dr. James Parkinson did not choose their names to name the diseases they discovered.

Parkinson suggested the name "Stirring (or trembling) paralysis, but it was" Parkinson's disease "that prevailed, a name suggested by neurologist Jean-Martin Charcot after Parkinson's death.

That was during the height of medical eponymy, and many important diseases are now known to the person who discovered them.

But times have changed, and that of the lone pioneer scientific gentleman or doctor was in the past.

“Most of the cutting-edge research is done by large teams instead of individuals. Eponyms do not provide useful clinical information, and they do not always mean much when they cross cultural or linguistic boundaries, ”explained medicine historian Richard Barnett.

Hughes noted that a group of his patients had "sticky" blood. The condition is now known as Hughes syndrome. (Photo: Pixabay) On behalf of the victims

There is also a greater awareness of the impact of naming a disease with the name of the person or group of people in which it was first identified.

One of the cases that illustrates how delicate the problem is is that of HIV / AIDS.

Originally, the Centers for Disease Control and Prevention of the United States (CDC) called it "4H disease", as it seemed to affect only Haitians, homosexuals, heroin addicts and hemophiliacs.

The Middle East Respiratory Syndrome (Mers) was first identified in Saudi Arabia. (Photo: Pixabay)

The press referred to her as Grid, which was the abbreviation for gay-related immune deficiency or homosexual-related immunodeficiency.

In the name of the place

Another option has been to use place names instead of people to name a condition.

But the name of the place where you live is associated with a disease is also not often a cause for celebration.

WHO warned that the use of people and place names has "unintended negative impacts" that could have "serious consequences for people's lives and livelihoods."

That is something that Linfa Wang of the Duke-NUS School of Medicine in Singapore knows very well.

He and his team suggested they name a newly discovered virus with the name of the place where it was discovered: Hendra, Australia.

"We thought that since Hendra is a small suburb of Brisbane, not many people would know him, so it was' safe", "he explained.

The name of the Hendra virus was quickly accepted by the scientific community.

However, soon the residents of Hendra began to express their opposition. They were convinced that this name was having a negative impact on the suburb.

"From time to time, I received calls from a resident, real estate agents and even angry journalists," Professor Wang said.

For years the residents tried in vain to change the name.

Professor Wang, meanwhile, learned to be very careful in naming other viruses.

Laugh instead of cry

Others, however, have taken a different approach to associate with a disease.

In the 1970s, the town of Old Lyme in Connecticut registered a large number of children and adults contracting a tick-borne disease that became known as Lyme disease.

Ticks can carry the Borrelia bacteria, which can infect humans. (Photo: Pixabay)

Despite the negative connotations of the name, the city prefers to take it as a joke.

The Lyme County store sells t-shirts with images of ticks, and the local youth lacrosse team is called Ticks.

And there are even cases in which negative reactions can have positive consequences.

In 2010, a group of international researchers published an article on the increased prevalence of an enzyme known as metallo-beta-lactamase 1 in New Delhi, the city in which it originated.

N.D.M.-1 is of particular interest to microbiologists because it can make bacteria resistant to carbapenems, a class of potent antibiotics.

The document provoked a violent reaction in India, but investigators, whose intention had not been to offend, noted that the uproar drew attention to the crucial issue of drug resistance.

Generic descriptions

Although it is difficult to change the name of a disease, sometimes there are strong political or ethical reasons.

Until a few years ago, granulomatosis with polyangiitis (a rare condition that causes inflammation in the blood vessels that restricts blood flow to the organs) was known as 'Wegener's granulomatosis'.

But that name was abandoned after it was learned that Friedrich Wegener had been a member of the Nazi party who possibly participated in experiments with people held in concentration camps.

After years of controversy, in 2015 the WHO published a document with the best practices for new human diseases to receive socially acceptable names.

It encouraged researchers, scientists and doctors (or any other person assigned the task of naming a newly identified ailment) to avoid geographical locations, names of people, species of animals and terms that "raise an undue fear", such as "unknown," "epidemic," or "deadly."

Preferably, generic descriptive terms based on symptoms (for example, respiratory disease, neurological syndrome or watery diarrhea) and more specific descriptive terms (for example, progressive, juvenile, severe or winter) should be used. If the pathogen causing the disease is known, it should also be part of its designation (for example, coronavirus, influenza virus, Salmonella, etc …).

But there were those who worried that some new names might be too complex.

"Many of the diseases I treat are so complicated that they would need ten words to describe them," Hughes said.

Perhaps another option would be to resume the habit of naming diseases in a somewhat more poetic, though imprecise, way, such as malaria, whose name comes from Italian for "bad air."

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