Emma Heming Willis is reflecting on the burden of guilt she has carried since her husband, Bruce Willis, was diagnosed with frontotemporal dementia (FTD) in February.
In a personally penned piece for Maria Shriver’s Sunday Paper, the model expressed gratitude for the privileges she has as a caregiver, with access to specific doctors and medical professionals that may not be available to everyone.
“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.
Acknowledging the media attention surrounding her family’s journey, she emphasized the multitude of untold stories, each deserving compassion and attention. Emma added, “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.”
She emphasized, “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 further detailed a crucial lesson she has gained during this ongoing ordeal—the significance of community. Initially hesitant about publicly revealing Bruce’s diagnosis, she confessed to grappling with the decision. Nevertheless, once she opened up about it, she expressed a sense of relief.
“Suddenly, I wasn’t alone anymore and I could seek the support Bruce, myself, and our family so desperately needed,” Emma wrote.
After learning about her husband’s diagnosis, Emma shared that she became actively involved in raising awareness for FTD. Her inspiration stemmed from witnessing individuals championing causes dear to their hearts. She expressed, “I’m inspired and motivated by that fact.”
While Emma has accepted the current absence of a cure or treatment for FTD, acknowledging the evolving research on the disease, her objective is to both educate herself and others in the pursuit of finding one.
Reflecting on conversations with Dr. Bruce Miller from UCSF, a trailblazer in FTD research, Emma recounted, “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 highlighted ongoing clinical trials for the first disease-modifying treatments for FTD, actively seeking participants.
Remaining optimistic about the prospect of ending FTD, Emma urged, “Now is the time for our community to take action to end this disease.”
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