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Spotlighting Bruce Willis’s condition during FTD Awareness Week

Pioneers of frontotemporal dementia diagnosis, research, care available for interviews

  • Patients with FTD are available for interviews with media
  • It takes an average of 3.6 years to get an accurate FTD diagnosis
  • 'FTD is vastly underdiagnosed due to lack of awareness among the public and clinicians'

CHICAGO --- After first being diagnosed with aphasia in the spring of 2022, actor Bruce Willis was formally diagnosed almost a year later with frontotemporal dementia (FTD), a debilitating disorder that can affect a patient’s personality, socials skills and speech.

Willis’s journey is common, as it takes an average of 3.6 years to get an accurate FTD diagnosis. This week (Sept. 22-29) is World FTD Awareness Week, which aims to shed light on this often misunderstood and misdiagnosed disorder.

“FTD is vastly underdiagnosed due to lack of awareness among the general public and clinicians, therefore, the need for these public awareness campaigns, resolutions and proclamations,” said Darby Morhardt, a research professor at the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease at Northwestern University Feinberg School of Medicine, which has been a leader in FTD diagnosis, treatment, research and care. 

Journalists interested in speaking to experts in this field or patients with FTD at the Mesulam Center can contact Kristin Samuelson.

“Our clinic has always seen a fairly steady number of people living with FTD, but we are a specialty clinic where people find us eventually after seeing two to three physicians or more, and living with a lot of confusion, anxiety and uncertainty often for years before they get an accurate diagnosis,” Morhardt said.

A leader in FTD diagnosis, research, treatment

FTD represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. It affects people between the ages of 21 and 80, with the largest percentage of those affected being between 45 and 64.

One type of FTD is primary progressive aphasia (PPA), a rare, overlooked and underserved syndrome that destroys a person’s language. Dr. Marsel Mesulam discovered and named PPA, which also is called Mesulam’s disease. Read more about Mesulam’s discovery of PPA and the Mesulam Center’s work.