What It’s Like to Live with One of the World’s Most Painful Disorders

The complications from surgery have prompted a nonprofit volunteer organization, the TNA Facial Pain Association, to find a cure by 2020. The project, led by the Facial Pain Research Foundation, consists of more than 30 scientists working on a range of solutions, including injections to fix genetic causes, insert therapeutic cells, and repair the nerve’s protective covering. These advances could have important impacts on other neuropathic pain conditions, too, according to the association’s trustee, Michael Pasternak, a former TN patient recently appointed to the Interagency Pain Research Coordinating Committee, a federal advisory committee under the National Institutes of Health.

“When we fix the trigeminal nerve, we’ll be able to fix phantom nerve pain,” said Pasternak, referring to neurological pain not caused by an outside stimulus, and most commonly associated with phantom limb pain. “We’ll be able to fix nerves that have been damaged by chemotherapy.”

Until a cure is found, however, the young people who suffer from TN continue to face the challenges of their disease.

“Being 27, this is the time of your life,” said Parroco. “But so many things change. It puts a stop on a lot of those plans. You have to re-arrange them.”


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