Have you heard of the woman who can smell Parkinson’s disease? She helps doctors find a new way to diagnose this debilitating condition. World’s Most Extraordinary People, the new show starting on September 25 on Sony BBC Earth, features people like her who have unusual abilities or medical conditions and choose to help doctors understand the human body better.
Jacqueline Smith, the executive producer on the show tells us how the show is not meant to sensationalise the lives of these people, but to collectively understand the way the human body works.
“There are so many genes, millions of chemical reactions that happen every second and it’s difficult to isolate a cause for any kind of dysfunction unless you find someone who is different from the rest of us,” says Smith, who rolls up her sleeves and works with her team to find such people through a network of contacts in the medical field all over the world.
She says that though she hasn’t met the extraordinary people featured on the show, she has extensively spoken to some of them on the phone. Smith shares a story about twin girls who had a degenerative disease. Their parents left a lasting impression on her. “The twins had a degenerative brain disease and like any parent, theirs too wanted to give them a long and healthy life. They were told that their twins wouldn’t reach the age of 10 with this condition, but they decided not to take this prognosis at face value and kept searching for treatment. My producers, because this is their line of work, can be quite dispassionate, but one of them, who worked with them in person, was extremely moved after their meeting,” says Smith, adding, “They opted for a trail, which had a positive influence on their daughters’ condition. But because they were older when they started, the treatment could only slow down the progression of the degeneration, not stop it completely.”
Talking about another person, a man who was fit and active till he was diagnosed with an autoimmune disease, sclerosis. In a short time, he went from active to disabled, and he was told that the disease is incurable. “He had very little time to adjust to this complete change in his life. But courage made him carry on. He underwent a risky treatment which destroyed his faulty immune system using stem cells. He knew he might not survive it, but in some time he was back in the swimming pool and diving again. I spoke to him and he’s an inspiring person. He was philosophical about what would’ve happened to him had the treatment not been successful. The recovery gave him a new hope and new purpose in life,” says Smith.
Sensitivity and trust
Smith, and her team are clear about respecting the patient’s problems and privacy. “It would have been very easy to sensationalise the story, but that is not the purpose of the show. We did not want to show how somebody had an unusual life because of their condition. We did not want to take personal and emotional content from them and show it to people.We wanted to tell their stories with a view much more profound and fundamental — medical advances, and specific innovations as a result of their stories. We found that people were incredibly willing, respective and cooperative to engage with our audience on that basis. They are not pressured to tell us the personal side of their stories, or anything they were uncomfortable with. If we filmed something and they later realised that they didn’t want it, they could tell us and we would respect it. We work on building that trust,” says Smith.
She points out how people with such medical conditions prefer not to talk about what they’re feeling to family members and friends because they think that the families are sick of hearing it. Doctors are too busy with cases. But they open up in front of the camera. “Every time they interact with someone, they feel like they are imposing on the other person, so they don’t. When we start filming, for the first time they feel that someone with unlimited time is willing to listen and interested in what they have to say. They build a relationship of trust with this newcomer in their life, and it is our responsibility to uphold that trust,” says Smith.