The actor was diagnosed with frontotemporal dementia in February
Emma Heming Willis is opening up about the guilt she’s felt since her husband,
Bruce Willis, was diagnosed with frontotemporal dementia (FTD) in February.
In a self-written article for Maria Shriver’s Sunday Paper,
the model shared how lucky she is as a caregiver to have access to certain doctors and medical professionals that others might not.
“I struggle with guilt, knowing that I have resources that others don’t. When I’m able to get out for a hike to clear my head, it’s not lost on me that not all care partners can do that,” Emma wrote.
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Bruce Willis and wife Emma Heming Willis attend the “Motherless Brooklyn” Arrivals during the 57th New York Film Festival on October 11, 2019 in New York City. PHOTO:
THEO WARGO/GETTY
“When what I share about our family’s journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern,” she continued. “At the same time, I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood.”
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She added, “I want people to know that when I hear from another family affected by FTD, I hear our family’s same story of grief, loss, and immense sadness echoed in theirs. It’s important to me to be an advocate on behalf of those families who don’t have the time, energy, or resources to advocate for themselves.”
In the article, Emma also explained how one of the lessons she’s learned amid this ongoing journey is the importance of community. At first, she struggled with how to come forward to the public about Bruce’s diagnosis, she said. However, once she shared the news she said she felt relieved.
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“Suddenly, I wasn’t alone anymore and I could seek the support Bruce, myself, and our family so desperately needed,” Emma wrote.
“With a specific diagnosis, you have a chance to find a community,” she later continued. “You get to connect with people who understand your story immediately. You don’t even have to explain yourself. The people I’ve met and interviewed in the FTD community have so much compassion, and are so determined to make things better for the next family.”
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Following her husband’s diagnosis, Emma revealed she got involved in raising awareness for FTD. Her inspiration came from watching people raise awareness for other causes close to their heart, she shared, adding, “I’m inspired and motivated by that fact.”
While Emma has come to terms with the fact that there’s no cure or treatment at the moment for FTD — “Research on the disease is evolving,” she noted — her goal is to educate herself as well as others in an effort to find one.
“To speak with UCSF’s Dr. Bruce Miller—a pioneer in FTD research—and to listen to him talk about what he calls the ‘obsession this community’s researchers have with finding treatments and a cure’ is to be inspired,” she wrote. “The first disease-modifying treatments for FTD are in clinical trials right now, actively recruiting participants.”
Hopeful for an end to FTD, Emma added, “Now is the time for our community to take action to end this disease.”