When A Disease Gets A New Name

When I think of significant milestones in medicine, the first things that come to mind are the advent of vaccines, antibiotics and, more recently, artificial intelligence. For a nutritionist practising today, however, one of the biggest developments has been the arrival of anti-obesity drugs such as Ozempic and Mounjaro. These medications have dominated headlines and sparked widespread discussion.

But instead of focusing on these highly publicised breakthroughs, I would like to draw attention to something relatively less dramatic, which is the renaming of medical conditions. At first glance, a simple change in terminology may seem rather inconsequential. However, a name change often reflects both our past understanding of a disease and the direction in which medical science is now moving.

Changing names is hardly unusual. Cities, roads, buildings and marketplaces are frequently renamed, typically reflecting shifts in politics, culture or power. Individuals, too, sometimes change their name or alter the spelling of their name in the hope of achieving personal, social or financial benefits. In each case, a name change serves a purpose.

What, then, does a change in the name of a medical condition signify? Can it really make a difference to those living with the disease? While it may seem like a stretch, the answer is yes. A name influences how a condition is understood, diagnosed and discussed. It can shape awareness, reduce stigma, and also potentially improve the quality of care that patients receive.

Consider the recent change from NAFLD (Non-Alcoholic Fatty Liver Disease) to MASLD (Metabolic Dysfunction-Associated Steatotic Liver Disease). Following three years of deliberations involving experts from 56 countries, the nomenclature was revised. One obvious reason for the change was to move away from terms such as “fatty” and “alcoholic”, both of which can contribute to stigma. More importantly, the new name better reflects the complex metabolic and cardiometabolic factors that drive the condition. This is particularly relevant for India, where more than 30 per cent of the population is estimated to be affected by fatty liver disease. A name that highlights the underlying metabolic dysfunction, which is often linked to obesity, insulin resistance and diabetes, provides a more accurate understanding of the condition.

Another recent and significant name change involves a condition that affects millions of women worldwide. I am referring to PCOS or PCOD (Polycystic Ovary Syndrome/Disorder), a term that has been in use since 1935. For many years, endocrinologists recognised that the name did not adequately capture the complexity of the condition. Ovarian cysts represent only one aspect of the disorder, and not all women with PCOS even have ovarian cysts. Some experience excess hair growth, some struggle with weight gain, while others have predominantly metabolic or hormonal symptoms. Despite these limitations, the name remained unchanged for nearly a century. It took more than 14 years of consultation and the involvement of 56 organisations before a consensus emerged around a proposed new name: PMOS (Polyendocrine Metabolic Ovarian Syndrome). The lengthy process is enough to illustrate how difficult but also how important such changes can be.

When the name of a disease is revised, it brings with it the possibility of a better understanding of the condition and, consequently, more accurate diagnosis and treatment. In the past, many women with PCOS were prescribed hormonal medications for years, even when some of their symptoms may have been strongly influenced by metabolic disturbances, stress or other endocrine factors. Moving from a name centred on ovarian cysts to one that acknowledges broader endocrine and metabolic involvement encourages a more comprehensive approach to care.

The proposed shift to PMOS also assures us of a welcome development that women’s health is finally receiving the attention it has always deserved. Historically, women’s health concerns have often been under-recognised or poorly understood. In the instance of heart disease, it took decades for the medical community to recognise that heart attack symptoms in women can differ significantly from those seen in men. Medical training was largely based on male presentations of disease, leading physicians to focus primarily on chest pain, while symptoms more commonly reported by women, such as fatigue, nausea and jaw pain, were often overlooked.

All of this tells us that a change in name is rarely just a correction in terminology. It signals advances in knowledge, challenges old assumptions, and points towards a future where diseases are recognised and managed more accurately. Sometimes, a new name can do much more than describe a condition by simply changing the way we think about it.