Bruce Willis and his wife have helped a couple facing their own young frontotemporal dementia diagnosis.
When Emma Heming Willis, 47, watched a video of Sean Durbin, 58, and his wife, Lisa Ihnat-Durbin, 50, telling their story, she recognized the courage it takes to turn personal hardship into public advocacy and teamed up with them to raise awareness.
Sean, from Mentor, Ohio, was diagnosed with the condition after he found his words slipping away mid-sentence.
Now he and wife Lisa use Willis’ diagnosis to help explain his condition to friends and family.
Now, alongside Cleveland Clinic and Emma, they’re working to expand awareness, advocacy, and resources for families facing FTD.
Sean first noticed subtle changes last year when he was 57.
Concerned, he turned to Lisa, who urged him to seek medical evaluations.
Those led to a diagnosis of frontotemporal dementia, confirmed by Cleveland Clinic neurologist Dr. Jagan Pillai.
FTD is a group of brain disorders affecting the frontal and temporal lobes.
It impacts language, behavior, and comprehension, and often develops earlier than Alzheimer’s disease.
Bruce Willis, 70, was diagnosed with the progressive brain disease in 2023.
For Sean and Lisa, explaining the diagnosis to others has been one of the hardest parts.
They’ve found themselves referencing Bruce Willis’ own journey to help people understand.
“It was just easier to say, ‘It’s the same thing Bruce Willis has,’” Lisa said in a video shared by Cleveland Clinic.
“Then people could ask questions and start to understand.”
Willis’s condition has helped put a spotlight on FTD.
A study published in Innovation in Aging by Dr. Pillai and colleagues found that widespread coverage of his diagnosis has significantly improved public understanding of the disease.
Now, Cleveland Clinic has teamed up with Sean, Lisa, and Emma to expand awareness and promote access to resources for younger families dealing with FTD.
“You have this sort of story in your mind of how your life is going to play out and then to see it completely ripped from you is just heartbreaking,” Emma said in the video.
“You have to sort of figure out your new chapter of your life.”
She added: “When you educate yourself and understand the disease, you can better support yourself as well as your person.”
Lisa describes “advocacy” as a “huge part” of bringing greater awareness to FTD.
“Thank you for stepping into those shoes,” she added, referencing Emma’s openness in sharing her caregiving journey with the public.
Although there are currently no treatments for FTD, doctors stress the importance of early diagnosis.
Identifying the disease sooner provides families with time to plan ahead, access support services, and even participate in clinical trials.
Most importantly, it helps patients and loved ones make sense of the often-confusing changes they’re experiencing.
For the Durbins, gratitude and honesty remain the focus. “I noticed at times, like, I couldn’t quite get my words out,” Sean said, recalling that he once could “verbalize” himself easily.
“That’s when I first noticed I was struggling.”
Lisa sees strength in their ability to face the condition together.
“We had our wedding anniversary and he just said, ‘You know, I think we’re stronger than ever together.’”
She added: “We’re aligned with the message of wanting to get the word out.
“I’m grateful every day that I have and every moment I have with Sean, and that hasn’t changed.”
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