The Interesting Story of the Woman Who Can Smell a Disease Before Symptoms Appear

Joy Milne
Joy Milne: Photo copyright: NPR

For one woman in Scotland, scent has become more than just a gentle reminder of life’s details because she can smell a disease before symptoms appear. Her name is Joy Milne. Joy can detect Parkinson’s disease years before symptoms appear. She is a retired nurse from Perth, a city that sits beside the River Tay. For years she lived what many would consider an ordinary life. She raised children, worked in the hospital, and cared for her husband, Les. Nothing in her routine hinted at an unusual talent. It emerged slowly and without intention, carried on a change she noticed long before anyone else did.

The First Sign

The story begins more than thirty years ago when Joy noticed that her husband smelled different. It was not the scent of soap or clothing or the usual changes that come with age. It was deeper, fixed in the skin, and difficult to explain. She remembers it as a musky scent, almost heavy, lingering on his pillow and in his shirts.

She tried to ignore it at first. Nurses often notice what others miss, but even she hesitated to bring it up. When she did mention it, she spoke gently, wondering if Les had changed his soap or aftershave. He had not. Neither of them realized that this small observation would foreshadow a shift in their lives.

Years later, when Les was in his early forties, he began to show the earliest signs of Parkinson’s disease. The symptoms appeared gradually, almost quietly, then grew more visible with time. Slow movement. Rigid muscles. A softer voice. A slight tremor that worsened as the years passed. Only then did the connection begin to form in Joy’s mind. The strange scent she had noticed had appeared more than a decade before doctors made the diagnosis.

Most families would have left the memory at that. A detail. A coincidence. Yet circumstances opened a door that allowed Joy to speak and, more importantly, to be heard.

In 2012 Joy attended a support meeting for Parkinson’s families. A scientist from the University of Edinburgh spoke about research on the disease. When he opened the room for questions, Joy raised her hand and said something that caught the attention of everyone present. She told the scientist that she believed she could smell Parkinson’s.

Her claim rested on conviction rather than proof, although her story carried weight because of her medical background. She explained when she had first noticed the scent and how it had remained consistent over the years. When she had attended the support meetings, she sensed the same odor on others who lived with the disease.

Many would have dismissed the claim. Yet the scientists in the room did not. They asked for more details. They asked when she noticed the scent, how strong it was, and whether she could detect variations. Something in their questions signaled that they understood the value of unexpected observations. Medical progress often begins at the edge of what seems unlikely.

Dr. Tilo Kunath and his colleagues decided to test her ability. They reached out later and invited her to participate in a controlled experiment. The goal was simple. They wanted to learn whether the scent she described was real, measurable, and consistent.

The experiment that followed became known informally as the T-shirt test. Volunteers with and without Parkinson’s disease wore cotton shirts overnight. These shirts were then collected, sealed in containers, and presented to Joy at random. She was asked to smell each one and identify which shirts belonged to individuals with the disease.

In the world of research, such experiments must be designed carefully to avoid errors. Joy was not given any information about the participants. She did not see their faces. She did not speak with them. She had only the scent on the shirts to guide her.

The results surprised the researchers. Joy identified the Parkinson’s shirts with remarkable accuracy. In fact, she matched every shirt correctly except one. According to the researchers, she had found a scent pattern that science had not yet recognized.

Months later, the one incorrect shirt revealed the most striking detail. The person who had worn it was not diagnosed with Parkinson’s at the time of the test. But the diagnosis came later. In the end, Joy’s identification was correct. She had sensed the disease before the individual or the doctors knew it was present.

The results changed the course of the research. If the scent was real, then something in the body was changing in the early stages of Parkinson’s. Something chemical. Something measurable. Something that produced a scent before symptoms appeared.

Once the researchers confirmed the accuracy of Joy’s ability, they set out to discover what produced the odor. The skin contains natural oils. One of them is sebum, which forms a thin protective layer. They suspected that chemical changes in this oil might create the scent she recognized.

To test this idea, scientists collected skin swabs from people with Parkinson’s and analyzed them using sensitive instruments that detect chemical compounds. Their aim was to isolate specific molecules that might explain the odor. The analysis revealed a number of compounds present in higher concentrations among individuals with the disease.

The discovery did not solve the entire puzzle, but it offered a foundation for understanding how the disease changes the body long before the first tremor appears. It also created the possibility of developing diagnostic tools that would detect Parkinson’s at a much earlier stage.

For decades, researchers have known that the disease progresses silently for years before symptoms become visible. By the time someone seeks medical help, many of the nerve cells affected by Parkinson’s have already been damaged. Early detection could open the door to more effective treatment, lighter symptoms, and better long-term outcomes.

Joy’s ability brought attention to an area of research that had been overlooked. Her sense of smell became an unexpected instrument for scientific progress.

While researchers focused on the chemical patterns, Joy lived with the weight of a talent she never sought. Her sense of smell did not stop with Parkinson’s. She described being able to recognize changes in scent for other illnesses as well. The ability left her with questions she did not always know how to answer. She understood that scent could reveal what disease a person might carry even before they themselves knew it.

She approached this with care. She did not tell strangers her impressions. She avoided conversations that would cause distress. She worked with researchers only when asked and only in structured settings where her observations could contribute meaningfully to medical advancement.

People who met her often wondered whether her life became filled with concerns about the health of others. She acknowledged the burden but explained that her focus remained on the task of helping researchers identify patterns that could be translated into tests used by doctors.

The story of her ability did not remove the weight of her husband’s illness. She lived through the progression of Parkinson’s at close range. She understood its difficulty. The hope that her ability might one day help others brought meaning to the pain she witnessed.

The Path From Mystery to Medical Tool

The idea that diseases carry distinct scents is not new. In earlier centuries, physicians sometimes used scent to guide diagnosis. They noted the sweet smell of certain infections or the sharp scent of metabolic disorders. Yet as medical tools advanced, scent became a less central part of diagnosis. Machines, lab tests, and imaging took the lead.

Researchers studying Joy’s case began to realize that scent might still hold untapped value in the modern world. If chemical changes in the skin create a measurable scent signature, then instruments could be developed to detect those patterns with precision.

Several research centers now explore this possibility. They work to identify chemical markers for Parkinson’s and other conditions. The long-term goal is to build diagnostic devices that do not rely on symptoms alone. Such devices would look for the chemical shifts that occur before visible signs appear.

While this research continues, the impact of Joy’s ability is already clear. She has shown that the human body releases information long before disease becomes obvious. Her story reminds researchers that early detection is not always a matter of complex machines. Sometimes it begins with an unexpected skill revealed through daily life.

The possibility of scent-based diagnosis raises important questions. How early can diseases be detected? How accurate can such tests become? Will they be used in routine medical visits? Will they allow doctors to intervene earlier and slow the progress of conditions that today are difficult to treat?

Researchers hope that the progress made with Parkinson’s will extend to other illnesses. Many conditions alter the chemical balance of the body. Some change the composition of breath. Others change sweat. Some change the oils on the skin. With careful study, these changes may become reliable clues for early diagnosis.

The work demands time. It requires careful analysis, large sample sizes, and rigorous testing. Yet the foundation has been laid. Joy’s contribution continues to guide scientists toward tools that could transform the way diseases are detected.

A Life Marked by Care and Insight

Throughout her life, Joy’s connection to health and caregiving shaped her understanding of people. She worked as a nurse. She supported families. She lived through her husband’s long illness. These experiences prepared her to notice details that others might overlook.

Her story is not about a supernatural gift or extraordinary senses. It is about the human capacity to observe. It is about the willingness to speak when something seems unusual. It is also about the courage to share an observation that others might doubt.

Her work with researchers stands as an example of how ordinary people can contribute to scientific progress. Observations made in personal life can lead to discoveries that help thousands. The key is curiosity and the readiness to listen.

Today, the research sparked by Joy’s ability continues. Scientists refine their understanding of the compounds linked to Parkinson’s. They work to build tools that detect these chemical shifts with precision. The goal is not to rely on the sense of smell alone but to develop instruments that capture the same information in a controlled and consistent manner.

For families living with Parkinson’s, the hope of early detection carries deep meaning. It offers the possibility of preparing for the future with more clarity. It may one day provide access to treatments that slow the progression of the disease before it alters daily life.

The story also encourages people to pay closer attention to the subtle changes in those they love. While few possess Joy’s level of sensitivity, the broader message remains relevant. The body often speaks before the mind recognizes change.

In the end, the remarkable part of Joy’s ability is not simply that she can smell disease. It is that she chose to use this skill to contribute to science. She stepped forward when the moment arrived, shared her observations, and opened the door to research that had long been overlooked.

Her story stands as a reminder that science grows not only through laboratories and machines but also through the experiences of individuals who notice what others miss.

 

 

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