In an opinion piece published last month in the Los Angeles Times, Keith Vossel, MD, of the University of California, Los Angeles, writes that celebrities and politicians who share their struggles with neurological challenges like FTD can create opportunities to advance public understanding of dementias and other brain disorders.

In the past, politicians and celebrities being candid with their health issues have educated others about diseases that were previously little known. Dr. Vossel highlights the decision by Ronald and Nancy Reagan to reveal the former president’s diagnosis of Alzheimer’s disease, which he links to a subsequent rise in Alzheimer’s awareness.

But, Dr. Vossel argues, while many politicians and celebrities have recently opened up about their cognitive issues, the resulting conversations haven’t provided the public with information they need to understand diseases like FTD. “Such information could aid millions of people who are (or should be) diagnosed with the same diseases,” he writes. “Opportunities are being squandered to educate the world on highly complex conditions that many of us will one day face.”

Conversations often develop around topics that are secondary to the condition itself, with essential information left out of public discussions, Dr. Vossel writes. When John Fetterman experienced a stroke while campaigning for the U.S. Senate, for example, there was comparatively little discussion about what a stroke is and how it can affect a person.

“Some physicians and news organizations did their best in these moments to advance understanding and public health, but overall, the nation missed much-needed opportunities to improve diagnosis and treatment of common psychiatric and neurological conditions,” he writes.

In the article, Dr. Vossel theorizes that one reason for public hesitation to discuss cognitive disorders is that they “strike at the heart of who we are.” FTD’s symptoms, for example, can be distressing and difficult to manage, especially if a person on the journey lacks context for their struggles.

However, Vossel notes that the family of Bruce Willis has set a strong positive example for how other celebrities, politicians, and even the media can approach discussions of cognitive conditions. The Willis family’s decision to go public with Bruce’s FTD diagnosis triggered a worldwide conversation on the disease.

Dr. Vossel writes that Emma Heming Willis’s advocacy and awareness efforts – particularly her candid social media and TV appearances – have helped educate others about how FTD affects people and about the efforts to develop treatments. He says that many can learn from her acts of service – most notably her September 2023 appearance on the Today show.

“Heming Willis was calm and cool as she discussed what must be a painful time for everyone involved,” Dr. Vossel writes. “Because she is sharing her experience, others may receive a diagnosis and treatment — and feel less alone.”

In addition to her media appearances, Emma Heming Willis has spread awareness of FTD on social media. For World FTD Awareness Week 2023, Heming Willis interviewed others in the community on her YouTube channel to discuss topics ranging from FTD research to sharing your story.

Do you want to help raise awareness of FTD too? AFTD’s volunteer network is working every day to raise awareness and make the journey easier for the next family – volunteer with us today!