Emma Heming Willis Recalls 'Desperately' Needing Support After Bruce Willis’ Dementia Diagnosis

“I could really exhale and sort of just feel this weight lift from my shoulders,” she said of sharing the actor’s diagnosis

• Emma Heming Willis attended the AFTD 2024 Education Conference to speak about husband Bruce Willis’ frontotemporal dementia (FTD) diagnosis

• The 45-year-old is finding community for FTD in hopes of raising awareness about the disease

• She said her goal is to one day see a treatment and cure for FTD

Emma Heming Willis is opening up about how much she “desperately” needed support after revealing husband Bruce Willis’ frontotemporal dementia (FTD) diagnosis.

On May 3, the 45-year-old attended the AFTD 2024 Education Conference and spoke about finding community while learning more about the disease. In a clip from the event, posted May 6 on Instagram, Emma was asked what changed for her and her family after publicly sharing the Die Hard star’s health battle.

“I could breathe,” she admitted. “I could really exhale and sort of just feel this weight lift from my shoulders. But everything changed for the better once we were able to disclose his diagnosis. I was able to seek the support that I so desperately needed for my husband, for our whole family.”

Emma later reposted the video, adding, “My mission is to raise as much awareness of FTD as I can. My goal? To one day see a treatment and cure.”

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Bruce's family revealed his FTD diagnosis in February 2023, releasing a group statement that read, "Bruce has always found joy in life — and has helped everyone he knows to do the same."

"It has meant the world to see that sense of care echoed back to him and to all of us. We have been so moved by the love you have all shared for our dear husband, father, and friend during this difficult time," they said at the time.

"Your continued compassion, understanding, and respect will enable us to help Bruce live as full a life as possible," the family concluded.

Frontotemporal dementia is an all-encompassing term for a group of brain disorders that threatens the frontal and temporal lobes of the brain. This means that parts of these lobes atrophy, and the shrinking of these areas can cause speech issues, emotional problems and changes in personality.

Other symptoms can include loss of motor skills — problems walking, swallowing or muscle spasms. Symptoms tend to get worse over time. Patients typically begin to notice symptoms between 40 - 65 years of age, but it can affect people who are younger. It is the most common form of dementia for people under 60.

Related: Bruce Willis' Health Updates: Everything His Family Has Said Since His Aphasia Diagnosis

On March 3, Emma posted a candid video on Instagram hoping to set the record straight on how misguided media coverage of neurocognitive diseases can affect families — including her own. She shared her response to being “clickbaited” by a headline about Bruce’s health.

“The headline basically says there is no more joy in my husband. Now, I can just tell you, that is far from the truth,” Emma began. “I need society – and whoever’s writing these stupid headlines – to stop scaring people. Stop scaring people to think that once they get a diagnosis of some kind of neurocognitive disease that that’s it. ‘It’s over. Let’s pack it up. We’re — Nothing else to see here. We’re done.’ No.”

She said that her family's experience has been the “complete opposite of that" amid Bruce’s FTD diagnosis.

“There is grief and sadness. There’s all of that. But you start a new chapter,” Emma said at the time, adding that the new chapter is filled “with love, it’s filled with connection, it’s filled with joy, it’s filled with happiness."

Emma’s comments came after she spoke with PEOPLE about the work she and her business partner and friend Helen Christoni do through their wellness brand, Make Time, which raises awareness of the importance of brain health, particularly for women. The pair were among those celebrated as PEOPLE’s Women Changing the World, which highlights women making a difference in their communities and beyond.

Through her work with Make Time, and as a caregiver to Bruce, Emma stresses the comfort one can find in a shared experience.

"I’ve been able to lean in on this new community I find myself in, so giving back to people who are on this journey as care partners has been super meaningful," she shared. "Community is everything."

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