Emma Heming Willis Shares Insights from Her Family’s FTD Journey in Essay

Graphic: Emma Heming Willis shares insights from her family's FTD journey in essay

In an essay published in Maria Shriver’s Sunday Paper, Emma Heming Willis shared some insights she has gathered while navigating the FTD journey following the diagnosis of her husband, the actor Bruce Willis.

Heming Willis writes that Bruce’s diagnosis was devastating to receive but that it finally provided essential context to what he and the family had been going through. Not only was her family able to find information to help them understand the disease, they were able to connect with others affected by FTD. As Heming Willis writes, a profound strength comes from having a community that understands what you’re going through.

“You don’t even have to explain yourself,” Heming Willis says. “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.”

Getting an accurate diagnosis in the first place is a long and lonely process owing to the lack of awareness of FTD. Heming Willis writes that, while she knew it would be difficult, she needed to raise her voice about the diagnosis to bring attention to FTD and its differences from Alzheimer’s disease. One of the most important lessons she’s learned on the FTD journey, she says, is never to underestimate the power of awareness.

“I’ve seen others raise awareness for other important causes and illnesses close to their hearts, and the changes that have followed have been remarkable,” Heming Willis writes. “I’m inspired and motivated by that fact. My goal is to see an end to FTD.”

It can be easy to be discouraged when learning that FTD has no cure after receiving a diagnosis. However, as Heming Willis emphasizes, FTD research is at a pivotal stage.

“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,” Heming Willis writes. “The first disease-modifying treatments for FTD are in clinical trials right now, actively recruiting participants. Now is the time for our community to take action to end this disease.”

Through the pain of the FTD journey, Heming Willis writes that she has found meaning in her experiences. Writing about the importance of finding meaning in your journey, Heming Willis remarks that she has become more compassionate and empathetic to what others are going through.

“There is power in becoming an advocate for this community,” Heming Willis said. “It’s something that I want our kids to see me face out loud, working with others, fighting through the stigma and isolation that a disease like this can bring.”

In addition to the power of being an advocate, Heming Willis highlights the more subtle power to be found in giving back to others.

“Recently, I met someone who had just learned about FTD in her life,” Heming Willis says. “When I first learned about the condition, I didn’t have someone in my corner who understood this experience. The fact that I was able to help connect this woman to the right information and resources was a moment I won’t forget. Even though I can’t change her situation, I can help guide her, tell her where to start, and help her feel a little less lonely.”

Heming Willis admits to battling guilt over having access to resources that others don’t and the media attention that her family’s journey receives. Yet, she knows that sharing the difficulty and grief of the FTD journey matters to others facing the disease.

Through connecting with a community that understands her and learning more about FTD, Heming Willis writes that she has learned that “hope is everything” on the journey.

“I have hope in having found a new purpose—admittedly one I never would have gone looking for—using the spotlight to help and empower others,” Heming Willis wrote. “And I have hope in how our entire family can find joy in the small things and in coming together to celebrate all the moments life has to offer.”

Having a community that understands what you are going through can bring you strength on your journey – the Find Support Near You page on AFTD’s website can help you find support groups and alternate ways to connect with others.

Are you interested in raising awareness or advocating for others on the FTD journey? Head to the Volunteer With Us page or AFTD’s Advocacy Action Center to learn more!

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