Joy Milne from Scotland was born with a rare and fascinating ability called hyperosmia, an extraordinary sense of smell that allows her to detect diseases, particularly Parkinson's disease, before clinical symptoms appear. This ability, which she first discovered as a child during a conversation with her grandmother, is becoming a revolutionary tool thanks to groundbreaking research that could change the way doctors diagnose complex neurological diseases. In this piece, we'd like to introduce you to Joy's story, the series of events that led her to "encounter" Parkinson's disease, and its significance for the future of the medical world.
How did a family secret become a scientific tool?
At the age of six, Joy told her grandmother that her friends "smelled strange." Her grandmother wasn’t alarmed – and to Joy’s surprise, she revealed that this keen sense of smell ran in the family. Only years later did Joy realize this was a medical condition called hyperosmia, and she began to regard it as a kind of private superpower. The first major impact of this extraordinary ability on her life occurred at age 28, when she started noticing an unusual smell from her husband, Les, who was then a young doctor. She couldn’t explain the new smell – strange, slightly yeasty – but it grew stronger over time. It was only 17 years later, when Les was diagnosed with Parkinson’s at age 45, that all the pieces came together for her: that smell was an early sign of the disease.
Parkinson’s – the silent enemy
Parkinson’s disease is the neurological disorder with the fastest-growing prevalence worldwide today, and the second most common after Alzheimer’s. It involves the slow degeneration of nerve cells that produce dopamine in areas of the brain responsible for movement and muscle control. The average age of onset is 57, although cases have been documented in younger individuals as well. In most cases, the first visible symptom is a tremor in one hand, which worsens and becomes more noticeable during movement. Since symptoms only become apparent after 60–80% of the cells are lost, early diagnosis can be life-changing – this is where Joy comes in.
Back to Joy - from a chance encounter to groundbreaking research
One day, when Joy and her husband Les attended a Parkinson’s support group meeting, Joy noticed that the smell from the past filled the entire room – not as sharp as she had sensed before, but similar, slightly greasy and musty. That was the moment of realization: Parkinson’s disease might have a smell. Shortly afterward, Joy reached out to researchers, leading to a collaboration that resulted in groundbreaking research.
The serious work began in 2013 when Joy met Professor Perdita Barran from the University of Manchester. To test Joy’s ability, they conducted a simple but clever experiment: Parkinson’s patients and healthy individuals wore T-shirts overnight. Joy was asked to smell the shirts and classify them. She identified all the patients – except for one person who was diagnosed as healthy despite her classification. The researchers considered this a reasonable deviation from Joy’s ability, but to their astonishment, a few months after the experiment, that “healthy” individual was diagnosed with Parkinson’s. Joy had detected the disease before medicine did.
From a sense of smell to a clinical test and the future of Parkinson’s diagnosis
Since then, Joy has become a full partner in advanced research. She teamed up with Professor Barran and a dedicated research team, supported by the Michael J. Fox Foundation, who are now working on developing a simple swab test for early detection of the disease – by collecting sebum (oily material) from the forehead and upper back, areas where the associated smell is particularly strong. The idea is to isolate a specific scent profile using analytical technologies, possibly in combination with trained dogs or an “artificial nose.” The latest study, which analyzed samples from 274 people, successfully identified 10 compounds linked to Parkinson’s using mass spectrometry. The implication: it may be possible to diagnose Parkinson’s based on chemical markers from the skin – years before symptoms appear.
The future looks promising: not just Parkinson’s diagnosis
Remarkably, Joy can also detect other diseases. She says she can identify disruptions in blood sugar balance in diabetic patients, post-surgical conditions, and even tuberculosis – which, according to her, has a “greasy biscuit smell,” unlike the “mustier” Parkinson’s. Her professional experience as a nurse, combined with her extraordinary sense of smell, makes her a unique figure in both the scientific and human domains.
Researchers like Professor Tilo Kunath from the University of Edinburgh, who was not involved in the experiment, expressed skepticism but were convinced after meeting Joy and realizing the reliability and consistency of her findings. “Scent-based medicine sounds outdated,” he admits, “but it might just hold the key to a real revolution.” If researchers succeed in identifying the molecules responsible for that smell, we may be able to develop precise early diagnostic systems – transforming the lives of millions of patients.
For more information, you are invited to watch the following video in English, where Joy Milne explains her unique ability, the research, and the future of Parkinson’s disease diagnosis.
