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A new book follows a family with an inherited form of FTD, a type of early-onset dementia.

The book explores how family members confront the possibility of losing their personalities.

Like many rare diseases, FTD has been largely overlooked by drug companies.

Imagine a genetic disease with the following characteristics. If you're born into a family that has it, there's a 50-50 chance you'll have the following life course. In your 40s, you'll start acting strangely, only you won't recognize that it's strange; everyone else will. You might lose your inhibitions, say mean things, and stop caring for yourself or your home. In time, you may begin isolating yourself, spending your days watching TV and chain-smoking. Eventually, you may lose the ability to speak and become a shell of yourself, needing help with the most basic functions.

This disease has a name: an inherited form of frontotemporal dementia, or FTD.

Robert Kolker, bestselling author of Hidden Valley Road, tells the story of one family with this disease in his new book, The Vanishing Family: Love, Fate, and the Quest to End Dementia. It's a heartbreaking journey into a poorly understood illness that slowly chips away at our very selves.

I interviewed Robert Kolker about how he came to this family, why some members chose not to learn their genetic fate, and what FTD reveals about the self.

JG: Can you recount how you came across this family?

RK: This family found me. They had read Hidden Valley Road, and one member of the family contacted me and said, "We have a rare disease, and we have nine children in our family." I had just spent several years researching schizophrenia,........

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