We’ve all heard such rumors or stories. They are usually of an old woman, who lives in a small village and possesses unique healing abilities, such as curing a specific disease or diagnosing certain medical conditions. Maybe she can’t even explain how she does it. She just “feels” it, she would say, like a sixth sense, or state that she’s just “gifted”. Some of us may have even sought her help or advice.
Such stories are so common that they appear in the folklore of almost every nation. The truth is, as always, complicated. It varies from old wisdom passed down through generations, waiting to be discovered by modern science and thoroughly explained; to unexplained abilities, miracles (with or without quotes), talent, placebo effect, coincidence, and up to honest beliefs in wrong and disproved methodologies, pseudo-science, superstition, ignorance, and, unfortunately, even malicious frauds.
However, we shouldn’t let the negative overshadow the positive. Otherwise, we would miss fascinating opportunities such as the following one: a woman with a unique ability that easily could fall under one of the above categories, unless a combination of her initiative and responsive researchers promoted science to discover new medical knowledge, thanks to a newly discovered “sixth” sense: a sense that allows diagnosing the Parkinson’s disease.
Joy Milne doesn’t live in a village, but in Perth, Scotland. She has a rare condition: hereditary hyperosmia, increased sensitivity to smell, or in other words, she is a “super smeller”. Whether it’s a gift or a curse, you decide. According to Milne, she has “to go shopping very early or very late because of people’s perfumes – I can’t go into the chemical aisle in the supermarket, so yes, a curse sometimes but I have also been out to Tanzania and have done research on tuberculosis (TB) and research on cancer in the US – just preliminary work. So it is a curse and a benefit.”
By possessing that “superpower” combined with her experience working as a nurse, she sharpened her sense of smell and developed over the years her own “medical olfactory library”. She calls it her “nursing bag of smells”. When her late husband, Les Milne, was 32 years old, something odd happened. In a talk with Sky News, Joy tells that “Les developed `the smell` when he was just coming up for 32, and I kept saying to him, you’re not showering properly. And he became quite angry about it at first, but I decided `we’ll, we have to live with it, that’s it`, and didn’t think much of it. It would come and go but it was getting stronger and stronger and various other things happened. He was a bit more tired, grumpy, and I thought he had a brain tumor.” Only twelve years later, when he was 44, Les was diagnosed with Parkinson’s.
Both attended support group meetings organized by the charity Parkinson’s UK and in them, Joy noticed something curious: the same distinct smell. It was at this point that she was able to link the smell to the disease – she could smell Parkinson’s. Her husband, a former doctor, was determined to find the right researcher to examine the link between odor and the disease.
Parkinson’s disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination. Symptoms usually begin gradually and worsen over time. As the disease progresses, people may have difficulty walking and talking. A significant problem in the treatment of Parkinson’s patients is the difficulty in diagnosing the disease in its early stages. Most patients are diagnosed only after the symptoms appear, which is many years after the degenerative process in the brain has begun. That’s because as of today, there is no simple test that makes it possible to diagnose the disease, so doctors are forced to base the diagnosis on motor symptoms and the patient’s medical and family history.
In 2012, the stem cell biologist Dr. Tilo Kunath from The University of Edinburgh had just finished a public talk about his research on Parkinson’s disease when he was asked a surprising question – “Why are you not using the smell of Parkinson’s to diagnose it earlier?” The question at first puzzled and confused him. He had never before been asked about smell and it was not something he had previously come across in his research. “I wish I’d had a camera to take a picture of Tilo’s face… He didn’t understand what I was asking. He asked me to repeat the question and he said `Oh, we’ll speak about it afterward`. But it was quite a few months before he contacted me again, because he’d been at a dinner and this researcher in cancer had said to him, `Look, find that woman` and he found me through Parkinson’s UK”.
Tilo discussed it with his colleague Professor Perdita Barran, but unlike Tilo who met Joy and believed her, Perdita Barran wasn’t convinced. To check it, they developed a pilot study where Joy was asked to smell and identify t-shirts worn by Parkinson’s patients. The test involved six t-shirts worn by Parkinson’s patients and six from a control group. According to Joy, the smell came mostly from the upper back, which made the scientists believe that the scent may be caused by a chemical change in skin oil, known as sebum. Joy correctly identified the six from the patient group, but she also identified one from the control group, which seemed like a false-positive. However, eight months later, that individual got in touch with Tilo to reveal that he too had subsequently been diagnosed with Parkinson’s. This extraordinary finding indicated that it might be possible to develop a test that could provide an early diagnosis of the disease.
These early findings were exciting and encouraging. The scientists knew that if they were able to identify a unique chemical signature in the skin linked to Parkinson’s, they may eventually be able to diagnose the condition from simple skin swabs. With Joy’s help, the research team continued to make progress. In 2019, they announced a major breakthrough – the discovery of chemicals enriched in skin swabs from people with Parkinson’s.
This key discovery led to further research to profile the complex chemical signature in the sebum of people with Parkinson’s. Through this work, scientists found subtle but fundamental changes as the condition progressed. This meant that a skin swab could potentially not only be used to diagnose Parkinson’s but could also be used to monitor the development of the condition. This, in turn, can allow the pharma companies to check the effectiveness of their drugs while measuring the state of the disease during the treatment.
In 2022, the researchers took another step forward and developed a simple and quick test to identify Parkinson’s patients. Professor Perdita Barran said: “We are now looking to take our findings forwards to refine the test to improve accuracy even further.”
Worth noting that it’s not the first time that a connection between sebum and Parkinson’s is noticed. In 1927, a cardiologist named David Krestin noticed that people who had Parkinson’s suffered from an excess of sebum, reported it, and said that it could be used to diagnose Parkinson’s. Unfortunately, his work was largely ignored. Now, once the main barrier was crossed, and the connection between smell and Parkinson’s was accepted and verified, there’s no doubt that new findings and developments are just around the corner.
Les Milne passed away at the age of 65, twenty years after he was diagnosed with Parkinson’s. Thanks to his efforts to find the right person (he was the one who found Tilo), Joy’s special ability, and open-minded researchers, a remarkable discovery was made. One may wonder, how much should’ve come together for these and future discoveries to be made. What if it wasn’t Joy’s husband who got Parkinson’s (although it is very unfortunate, and we express our deepest condolence), or Joy wasn’t a super-smeller or wouldn’t develop her super-sense? What if Joy wouldn’t go to the Parkinson’s support groups, and made the connection between the smell and the disease? What if Les Milne didn’t have a medical background, and wouldn’t be determined or able to find the right researcher? What if the researcher wouldn’t believe Joy? So many circumstances, good and sad, had to happen. We are left to wonder, and thank them, for their effort will help many people around the world.
Featured photo by Photo by Živa Trajbarič
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