Frontotemporal Degeneration

FTD

Emma Hemming Willis, wife of actor Bruce Willis, has written a book (The Unexpected Journey) about their experience with Bruce’s diagnosis of Frontotemporal Degeneration (FTD). Due to this book, the Association for Frontotemporal Degeneration (theaftd.org), and other dementia experts, the public and even physicians are better informed per FTD. On average, it takes about 3.5 years to get a diagnosis of FTD.

Little by little, the word is getting out. FTD is not rare, as some medical literature still states. FTD is more common than once thought. The problem is that in the past FTD individuals were often misdiagnosed, sent off to other medical specialists, and even put on wrong medications, such as medications for Alzheimer’s patients, which can make things worse for the FTD patient.

Better diagnostic tools are needed because FTD can begin in the 40s, 50s, 60s, when most people are still working. When FTD causes a person to leave a job or a career early, the loss of income hits hard! This hurts FTD individuals and their families. A swift diagnosis will help these individuals qualify sooner than later for disability benefits.

A new law by New York State Senator Michelle Hinchey and Assemblymember Amy Paulin makes New York the first state to create a research registry of FTD. This is an example of what is needed everywhere. May all those individuals and families who struggle with this often misunderstood form of dementia receive rapid and proper treatment and support.