DALLAS — North Texas doctors and specialists are intimately familiar with the degenerative brain disease now impacting actor Bruce Willis, as are an estimated 60,000 other Americans.
They also recognize that Willis' diagnosis is bringing badly-needed attention to a debilitating disease that may not get the financing and focus of more well-known disorders like Alzheimer's.
Frontotemporal dementia, or FTD, is the most common dementia for people under 60, although it can also affect those in their 60s and 70s. Willis, initially diagnosed with aphasia - an FTD symptom - is 67.
Progressive nerve cell loss in the brain's frontal lobes impacts behavior, personality, and social filters which begin to change or deteriorate. Other subtypes of this form of dementia can impact language, posture and balance, health experts say.
"Early initial signs are going to be changes in behavior and personality of the individual. Sometimes even some obsessive compulsive type tendencies," said Dr. Claudia Padilla, a neurologist at Baylor Scott & White.
"Unfortunately, right now, there are no treatments for any of the types of frontotemporal dementia but there are definitely medications that can help with the symptoms," continued Padilla.
The American Association for Frontotemporal Degeneration, which now has Willis on the front page of its website, is a bit more blunt:
"There are currently no treatments that slow or stop FTD. There is no cure, and no way to prevent its onset. Average life expectancy is 7 to 13 years after the start of symptoms."
"Although it's not good news, I think there is a way to support them to have them understand how to make the most of every day and have them to try to prevent and delay some of the progression," said Diana Kerwin, M.D., a specialist in geriatrics medicine at Texas Health Presbyterian Dallas.
"So we're still basically, again, trying to prepare for the disease and try to slow down the progression if we can, and then treating the symptoms," said Kerwin.
Willis' family, who says his ability to speak was one of the very first symptoms, writes today that:
"Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately," the family said. "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," the family writes. "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."
"And there is a lot of research, clinical research, that's going on right now to find that treatment, disease modifying treatment, that's so important," added Padilla.
"We have some of the best investigators and researchers looking at this to try to find better treatments to understand the underlying causes in order to prevent it and find better treatments for it," added Kerwin.
According to theAFTD.org, an estimated 50,000 to 60,000 people in the U.S. have been diagnosed with an FTD disorder, but the number of people living with FTD is likely higher because healthcare professionals often don't initially associate its symptoms with dementia.
"Misdiagnoses, such as depression or another psychiatric disorder, are common. Consequently, it takes an average of 3.6 years following the first appearance of symptoms to obtain an FTD diagnosis," the AFTD says.