Bruce Willis’ wife, Emma Heming Willis, has made it a mission to raise awareness about frontotemporal dementia (FTD) ever since the 68-year-old actor was diagnosed with the disease in February 2023. The diagnosis came just one year after he was diagnosed with aphasia, resulting in his retirement from acting.
With this week being World FTD Week (Sept. 24 – Oct. 1), Emma has been using her social media to help inform others about the impact FTD has on patients and their loved ones around the world. She has also teamed up with other leading figures in the FTD community to ensure the disease doesn’t go unnoticed.
On Monday (September 25), she joined Susan Dickinson – CEO of The Association for Frontotemporal Degeneration (AFTD) – and Hoda Kotb on the TODAY show to discuss FTD and how it has impacted Bruce’s ability to live a normal life. In Emma’s words, his diagnosis has been both a blessing and a curse.
On one hand, Emma Heming Willis was happy to learn of – and accept – her husband’s diagnosis since it allowed her family the opportunity to understand what was happening to him. On the other hand, it didn’t make the diagnosis any less painful for her family, who are now forced to watch their loved one struggle.
“What I’m learning is that dementia is hard,” Emma said – adding she doesn’t know if Bruce understands what’s happening to him mentally. “It’s hard on the person diagnosed. It’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say that this is a family disease, it really is.”
According to Susan Dickinson, many patients are misdiagnosed in the early stages and, in some cases, can go four years without receiving a proper diagnosis – by then, it has already worsened. “Most doctors aren’t familiar with it, so it can take almost 4 years for people to get diagnosed on average,” she said.
FTD is ‘a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain,’ according to the AFTD. The disease is often misdiagnosed as Alzheimer’s, Parkinson’s disease, or depression. An estimated 60,000 people have been diagnosed with FTD in the United States alone.
Tallulah and Scout Willis Praise Emma Heming Willis
After Emma Heming Willis’ appearance on the TODAY show, two of her stepdaughters – Scout Willis and Tallulah Willis – took to social media to praise her as a ‘champion for this cause’ as she continues to raise awareness about frontotemporal dementia. It goes to show how connected the Willis family truly is.
“I TRULY could not be more proud of @emmahemingwillis for being willing to step out into the public eye, (even though it’s terrifying!!!) to share our family’s story in service of spreading awareness about FTD,” Scout wrote in an Instagram Story, which included a clip of Emma’s emotional discussion with Hoda Kotb.
Scout goes on to call Emma a ‘champion for this cause’ and praises her for inspiring her ‘every single f***ing day’ with her ‘bravery and deep deep loving’ – adding that her ‘courage is moving mountains.’ Emma reposted the Story on her own page and Tallulah did the same – proving they’re sticking together.
Emma Heming Willis also shared a message for all the other caretakers and care-partners (which is what she likes to label herself). She wants others to know how important it is to ask for help and support – especially when it’s needed most – and to not only care for their partner, but for themselves as well.
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