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Rare brain diseases often misdiagnosed

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According to the World Health Organization, cases of dementia-related diseases, like PSP, are set to triple by 2050.

Three different times by three different doctors, Rex Yoder was told that his wife had Alzheimer's disease. Three times, Rex felt in his heart they were wrong.

His beloved wife of 38 years wasn't having the memory challenges often seen with Alzheimer's disease, but the lifelong athlete and former cheerleader was having trouble balancing. Her foot was beginning to turn inward, and she could no longer hop on one foot. It was getting more difficult for her to walk unassisted, and she was often falling.  Her family and friends also noticed that her speech was changing, and it took progressively more effort to get words out.  After months of waiting and inaccurate diagnoses, Patty's disease finally had a name: progressive supranuclear palsy (PSP).

"We see a lot of patients who have been told over and over again that they have Alzheimer's disease or they had a stroke," says William Hu, MD, PhD,  assistant professor of neurology at Emory University of Medicine. "We're now learning more about other types of dementia and how we can best serve this growing patient population."

According to the World Health Organization, cases of dementia-related diseases, like PSP, are set to triple by 2050. PSP can be classified under the frontotemporal degeneration (FTD) spectrum of disorders.  While classic forms of PSP primarily involve balance problems, patients with PSP can develop significant impairment in speech and cognition even in the absence of balanceproblems.  Like Patty, many people with PSP eventually lose the ability to shift their eyes vertically or horizontally, which further increases their risks of serious injuries from falls.

Currently, there is no effective treatment or cure for FTD. In the meantime, Rex is determined to learn as much as he can about his wife's disease and attended the Association for Frontotemporal Degeneration's education conference and annual meeting on April 27, 2012 in Atlanta.

"I know there is no medication or treatment that will help Patty," says Rex. "But the more I know about her disease, the better caregiver I am for her."

Hu spoke at the event and provided an update on the progress of FTD research at the conference.

"Events like this are important because they raise awareness of disease sthat are often overshadowed," says Hu. "The more we know about FTD, the more we can do to care for our patients and their caregivers."

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