This Woman Lives With The World’s Most Painful Disease

This Woman Lives With The World’s Most Painful Disease

Amanda Young, 39, is a fitness instructor in Brooklyn. In 2008, she was diagnosed with an excruciatingly painful disease called trigeminal neuralgia or ‘Suicide Disease’. Young has described the pain as, “It feels like somebody is taking a screwdriver, sticking it into my face, and then taking car battery chargers and connecting them and trying to turn my face on.”

At first, Young tried to hide her condition from others. As the disease progressed, the pain grew worse, and she eventually had to “come out” and tell people about her condition. She has admitted that one of her biggest fears is being incapacitated by the pain and thus unable to teach or pursue any of her other interests.

Young recently founded Face the Change, a program that seeks to call attention to trigeminal neuralgia and raise funds. In 2015, it held a fundraiser that netted $40,000. Researchers hope to find a cure by 2020, but since the disease is still poorly known, the donor pool is limited.

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Trigeminal neuralgia afflicts around 45,000 people in the US. It affects the trigeminal or fifth cranial nerve, which runs from the base of the skull to the face, and causes excruciating pain. It is sometimes called the “suicide disease,” because the pain can drive patients to take their own lives. Many patients have triggers that cause bouts of agony, and the triggers are often mild stimuli; in a video Young mentioned that simply pushing hair out of her face could bring on an attack.

Trigeminal neuralgia is most common in people who are over 50, and it is more likely to affect women than men. Patients may experience short and relatively mild bouts of pain at first, but as the disease progresses, the attacks become longer and more painful. Some people are in constant pain.

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