Bruce Willis wife says they were unprepared for his diagnosis -…

Bruce Willis has been residing in a separate, single-level home with 24/7 caregivers as his household offers with the brutal actuality of his frontotemporal dementia diagnosis.

The Hollywood icon, who is now 70, was recognized with the condition in February 2023 and has since largely retreated from the public eye to take care of his health. In the past few months, his household has provided uncommon yet heartfelt glimpses into how the disease is impacting both Willis and his kids.

Just a week before Bruce’s birthday in March this 12 months, Emma Heming Willis, his wife, launched The Emma & Bruce Willis Fund for Dementia Research and Caregiver Support. This basis is devoted to raising awareness, funding research, and offering sources for caregivers.

In a heartfelt op-ed titled “Why California Must Track Frontotemporal Dementia” for The San Bernardino Sun, the British model and actress opened up about how the Willis household was “totally unprepared to navigate” Bruce’s diagnosis.

She wrote, “When Bruce got his diagnosis, we walked out of the doctor’s office without a roadmap. No plan of action, no treatment, and no hope. Our doctor just told us to ‘check back in a couple of months’. As a wife and mom, I was already frozen with fear about the changes happening in our lives.”

She famous that on average, it takes three to seven years to obtain an FTD diagnosis, in half because many clinicians aren’t educated to acknowledge its early indicators. Calling out the delay in diagnosis, she reiterated that “those lost years really and truly matter, because they delay understanding and support.”

She additional explains that this occurs because “we don’t have the data.”

“The disease is not tracked. It does not become part of any dataset that researchers, clinicians, or policymakers can learn from. Without data, there is no clear picture of how many people are affected, or where resources are most urgently needed,” she added.

Speaking for sufferers and households affected by FTD, she explains that Senate Bill 1047 would require the California Neurodegenerative Disease Registry to start accumulating data on every single FTD diagnosis statewide.

“Being seen is the first step toward being helped,” the actress advocated.

Emma has been vocal about the Willis household’s struggles for a long time. When Bruce was first recognized, she revealed that she felt “very dark, very one-note of just grief and sadness,” ceaselessly left to hunt online for options.

“I ended up searching the web to figure out what to do,” she said.

Now bringing up daughters Mabel, 13, and Evelyn, 11, largely alone, Emma says caregiving compelled her to uncover which means. “Early on, I was too scared to say anything to anyone… I realized it would be beneficial to talk about it and raise awareness.”