From symptom to diagnosis: Bruce Willis has an untreatable disease called FTD.

Last year, the public was told the actor had "aphasia." Now, more is known and has been shared by his family.

Last April, I wrote a 573-word piece covering something in the news cycle at the time. Bruce Willis had been diagnosed—we were told—with “aphasia.” While in rare instances aphasia can occur in isolation in an otherwise completely cognitively intact person, it is exceeding unusual. So I wrote the Inside Medicine and posted it. Little did I know that it would go viral and quickly become the most read essay I had ever self-published, gaining hundreds of thousands of reads in a couple of days.

Aphasia is a symptom, not a disease.

Yesterday, Willis’ family announced what I had suspected—which is that the Hollywood actor has been suffering from a form of dementia, in this case “frontotemporal dementia,” or FTD. Even this diagnosis is somewhat of an umbrella term for a constellation of symptoms. Family history seems to be an important risk factor for developing the condition, but it is not the end-all-be-all.

The worst part is that unlike some other progressive neurologic diseases such as Alzheimer’s or Parkinson’s, there is no effective treatment for FTD.

As with all diseases that are diagnosed clinically (rather than by way of a biopsy, or some hallmark objective finding on an MRI, for example), FTD is clearly more than one disease. We just have not sorted all of the variants out. Without a clear understanding as to what causes a problem (or a set of problems), it’s tremendously difficult to develop a treatment.

Still, early recognition of FTD is important, so that patients and their families can plan accordingly and so that a safe environment can be created and maintained. Knowing that difficult days are ahead is painful, but that knowledge can also be extremely beneficial; the home of a 70-year-old person with FTD should be very differently organized than one of a typical person of the same age. There are safe spaces and there are dangerous ones. Getting ahead of this can save a great deal of pain and suffering down the road.

So, we are very early in the FTD story. Hopefully with public awareness and attention—which Willis’ diagnosis will certainly bring—more research will be funded and progress finally will be made towards developing treatments for this devastating condition/group of conditions.