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Experience: I can smell diseases in humans | life and style

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When I was six, I embarrassed a child in the classroom by raising my hand and telling the teacher that he was getting himself wet. He was sitting two rows behind me, but I could smell him heavily.

He was so upset that my grandmother was called to school. “Never use your sense of smell again,” she warned when we got home. He explained that I, like him, have hereditary hyperosmia – a high genetic predisposition to detect odors, so I am a very smelly person.

Where others use my sense of sight, I use my sense of smell. Disinfectants make me sick and perfumes overwhelm me. I used to rub some lavender balm under my nose to deal with unpleasant odors.

I met my husband, Les, at the age of 16. We were both pursuing medical careers, she is a consultant anesthetist and I as a nurse. We got married, moved to Yorkshire, then to Greater Manchester, and we had three sons.

I remember being hit by the scent of a patient on a hospital shift early in my career. I later found out he had diabetes, and what I smelled was elevated ketones, a chemical produced by the liver that builds up when diabetics get sick. Sniffing patients became a pattern, but I knew doctors wouldn’t accept my diagnoses, so I kept quiet.

In 1982, before Les’ 32nd birthday, I noticed a mushy, damp smell on her – she knew my sense of smell was heightened. I thought it might be the raw air from the operating theaters he works in, and I told him to take more showers. This caused controversy.

Twelve years later, in 1994, he was diagnosed with Parkinson’s disease. Once we endured the usual slow journey to diagnosis, the damage was irreversible. We instantly connected with the scent, but discovered, more than 20 years later, in the last months of his life, that I could detect it in others. By then we were living in Perth, Scotland and joined a local Parkinson’s UK support group. My chin lifted—a tick when strong scents hit me. It was very difficult. “These people smelled like you,” I said to Les at dinner.

We felt a responsibility to do something. We attended a lecture by Prof Tilo Kunath, a regenerative neurobiologist. “Why isn’t Parkinson’s smell used for early detection?” I asked. He didn’t answer, and we were disappointed, but Les was sure this wasn’t the end.

Four months later, Prof Kunath called our house. He found it after passing my question on to a research colleague: “You have to find that woman.” We started working as a team to prove my theory.

Les and I should have enjoyed retirement, but Parkinson’s had stolen our lives. We decided that others would not suffer in the same way. When Les died in June 2015, she made me promise to keep going. I spent time in the labs sniffing patient T-shirts and swabs for sebum, the skin oil we all produce and changes with the onset of Parkinson’s. I was able to detect with 95% accuracy whether the person had the disease. I was surprised.

In September of this year, our research team at the University of Manchester released a breakthrough: a three-minute test that can detect the disease by passing a cotton swab around a person’s neck. I felt very emotional. We are one step closer to early diagnosis and treatment.

I’ve been known as the “woman who can smell Parkinson’s,” and I’ve given lectures about my work. I work with people in California detecting cancers and the smell of tuberculosis with people in Tanzania. Smell is an underestimated sense. We accept a whiskey or perfume nose, but not a medicinal one. A professor once asked me, “Do you realize that you are closer to a dog than to a human?” he said. I took this as a compliment.

I am an advocate for both the World Parkinson’s Coalition and the PD Avengers, a global alliance to end the disease. At 72, I never thought this would be my life’s work. I keep thinking about how I lost my Les, but also how we’ve fueled his legacy in the last six weeks we’ve spent together.

As told to Deborah Linton. Comments on this piece are moderated in advance to ensure that the discussion remains on the issues raised by the article. Please note that there may be a slight delay in comments appearing on the site.

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