Bruce Willis has been given a second devastating diagnosis less than a year after it emerged he had an untreatable brain disorder.
The legendary actor, 67, has been told he has frontotemporal dementia (FTD) – an uncommon type of the disease that causes a deterioration in behavior, personality and language.
FTD – which is responsible for around one in 20 dementia cases – is caused by an abnormal build-up of proteins which damage cells in front and sides of the brain.
Alzheimer’s charities says that FTD symptoms are ‘very different’ to other more common types of dementia, such as day-to-day memory loss. Even in the early stages of FTD, many people can still remember recent events.
It comes less than a year after he was diagnosed with aphasia in spring 2022, after suffering a loss of ability to understand or express speech. Over time, this can progress into dementia.
Bruce Willis has been given a second devastating diagnosis less than year after it emerged he had an untreatable brain disorder (Pictured in 2019 at the European premier of Glass in 2021)
95% of right-handed people and two-thirds of left-handed people use the left side of the frontal and temporal lobes of their brains to process speech. The remaining one-third of left-handed people are right-brain dominant. When there is damage to this portion of the brain speech and language suffers.
In their statement today, Mr Willis’ family said: ‘Since we announced Bruce’s diagnosis of aphasia in spring 2022, Bruce’s condition has progressed.
‘We now have a more specific diagnosis: Frontotemporal dementia (known as FTD).’
FTD is an ‘umbrella’ term for dementias that mainly affect the frontal and temporal lobes of the brain, responsible for personality, behavior, language and speech.
Scientists say an abnormal build-up of proteins in the brain that damage brain cells cause the condition.
Over time these can also cause brain cells to die, leading the frontal and temporal lobes to begin to shrink (or atrophy).
Studies suggest genetic mutations and a family history of FTD put someone at higher risk of the condition.
There are two common forms of FTD.
One is behavior variant frontotemporal dementia (bvFTD), when nerve cell loss affects behavior, judgment and empathy.
The other form is primary progressive aphasia (PPA), which affects the nerve cells in the areas of your brain that affect comprehension and communication. These are key for language, speaking and writing.
The condition tends to begin in the 40s to 60s, with symptoms gradually getting worse over time.
In PPA, damage occurs to the temporal lobes on either side of the head nearest the ears leading to language problems.
It often begins with behavioral changes, such as starting to carry out actions that are socially inappropriate, apathetic or impulsive.
But — unlike in Alzheimer’s — patients can still remember recent events.
Other differences between the diseases include that FTD patients having more pervasive apathy and a lack of concern for others or lack of initiative.
They may also be able to remember the time of day and their location and keep track of recent events, unlike those with Alzheimer’s who struggle to retain new information.
But as the disease progresses more and more areas of the brain become damaged.
This is when symptoms become similar to those in late stage Alzheimer’s, including difficulty eating or swallowing, needing assistance to walk and being vulnerable to infections.
Mr Willis’s family said today that communication challenges were one of the symptoms that the actor was facing.
The disease can also progress to impact other mental skills such as memory and movement. It is known to cause slow or stiff movements, loss of bladder or bowel control, muscle weakness and/or difficulty swallowing.
About 10 to 20 percent of patients suffer from movement problems.
Alzheimer’s UK says that FTD symptoms are ‘very different’ to other more common types of dementia.
It adds that in the early stages of the disease, unlike with other types of dementia, patients can remember recent events.
Bruce Willis’ family said the star’s condition had ‘progressed’. FTD affects the lobes of the brain behind the forehead, which deal with behavior, problem-solving, planning and emotions (pictured with L-R wife Emma Heming, ex-wife Demi Moore and daughters Scout, Tallulah, Mabel, Evelyn and Rumer)
There is no cure for FTD, with treatment instead focusing on slowing the disease and managing the symptoms.
The rate at which the disease progresses varies greatly, with life expectancy ranging from two to ten years after diagnosis.
The Cleveland Clinic says that on average patients can expect to live for seven years and six months after diagnosis.
FTD is not fatal on its own, but causes other issues that are serious or even life-threatening.
Thse include problems swallowing — medically termed dysphagia. Problems with eating and drinking also raise the risk of developing pneumonia or respiratory failure.
Mr Willis’ family said: ‘Bruce always believed in using his voice in the world to help others and to raise awareness about important issues both publicly and privately.
‘We know in our hearts that — if he could today — he would want to respond by bringing global attention and connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families.
‘Bruce has always found joy in life — and has helped everyone he knows to do the same.’
The Willis/Heming family statement in full
‘As a family, we wanted to take this opportunity to thank you all for the outpouring of love and compassion for Bruce over the past ten months. Your generosity of spirit has been overwhelming, and we are tremendously grateful for it.
‘For your kindness, and because we know you love Bruce as much as we do, we wanted to give you an update.
‘Since we announced Bruce’s diagnosis of aphasia in spring 2022, Bruce’s condition has progressed and we now have a more specific diagnosis: frontotemporal dementia (known as FTD).
‘Unfortunately, challenges with communication are just one symptom of the disease Bruce faces.
‘While this is painful, it is a relief to finally have a clear diagnosis.
‘FTD is a cruel disease that many of us have never heard of and can strike anyone. For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know.
‘Today there are no treatments for the disease, a reality that we hope can change in the years ahead.
‘As Bruce’s condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research.’
They added: ‘Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately.
‘We know in our hearts that – if he could today — he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families.
‘Ours is just one family with a loved one who suffers from FTD, and we encourage others facing it to seek out the wealth of information and support available through AFTD (@theaftd, theaftd.org).
‘And for those of you who have been fortunate enough to not have any personal experience with FTD, we hope that you will take the time to learn about it, and support AFTD’s mission in whatever way you can.
‘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. Your continued compassion, understanding, and respect will enable us to help Bruce live as full a life as possible.’
-Emma, Demi, Rumer, Scout, Tallulah, Mabel, and Evelyn
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