In some ways, patients diagnosed with a well-understood and established disease, even a serious one, can consider themselves
lucky. At least they know what they're up against, and can bring the right weapons to the fight. Imagine if something began
to go wrong, but no one could tell you with any certainty what was happening. Years go by, along with the possibility of treating
the disease before it gets worse.
Susan Grant was a top financial advisor at American Express, overseeing millions of client dollars, when something happened
to her brain. "I knew something was different, but I didn't know what it was," says Grant. "Of course, American Express didn't
want me to tell my clients anything [about my condition], but when I sat down at a table with 100 clients to transition them
to a new advisor, and I tried to tell them the doctors don't know what I have, they wouldn't accept it. They wouldn't let
me dodge the question, so I just started saying, 'Something's different in my brain.'"
Several years and six wrong diagnoses later, Grant, at 53, was diagnosed with frontotemporal dementia (FTD), a CNS disease
that can strike in adults as young as 40 years old. Up to 50 percent of the dementia cases occurring before age 65 are thought
to be a result of FTD, according to the Alzheimer's Association. Grant has fought her way into clinical trials, and fought
back against physicians who've attempted to downplay her symptoms, or take a "wait and see" approach to medical intervention.
Many physicians believe that patients with FTD, and even Alzheimer's, aren't capable of "insight," meaning they can't recognize
changes to their mental state. That is true for some patients, says Grant, but in her case and in many others, patients do
recognize that something has changed, even if they don't yet have a name for it.
Because patients with FTD can face a rapid deterioration of executive function, it's critical to get the right diagnosis as
early as possible. That means using the right terminology in the doctor's office, and getting a referral for a neurologist
that specializes in neurodegenerative diseases. An early diagnosis helps patients better manage the disease, and seek treatment,
if not yet for the root cause of the disease, than at least for the debilitating side effects. Also, a definitive diagnosis
early on gives patients time to get their finances in order, and to take advantage of disability benefits, as Grant did.
In 2007, Grant founded Planning for Hope, a grass-roots organization geared toward empowering patients with FTD. She has authored
an instructive eBook for FTD sufferers, and raised $150,000 to create an hour-long documentary to promote awareness of the
disease, and to change the conversation about patients and the stigmas that come with a diagnosis. The film, also called Planning
for Hope, has been shown on a number of PBS affiliates, and can be watched online at http://FTDplanningforhope.com/.
Although there is no cure for FTD, Grant speaks highly of cognitive improvement software and the use of puzzles and word games.
She still bristles at the language NIH and other organizations use to describe FTD patients. They're described in the medical
literature as having "no morals" or "misbehaving in public," says Grant. "Why would anyone come forward if this is the language
that's being used?"