Disorder Causes People To Be Hopelessly Lost

Newly Discovered Disorder Has No Known Cause

Imagine for a moment what it would feel like to become lost in a familiar place, even your own home. That's a reality for people who suffer from a recently identified disorder called Developmental Topographical Disorientation.

"It's just so frustrating and scary to feel lost like that all the time," said Sharon Roseman a DTD patient.

For her, the road of life has been full of detours. She's struggled to find her way since she was just 5 years old.

"Everything that would normally look north/south becomes east/west and it's like someone picks up the universe, turns it a quarter turn, and sets it back down," said Roseman

She has Developmental Topographical Disorientation, or DTD, which means she struggles to form a mental map of her surroundings. Additionally, Roseman encounters a 90 degree shift in her internal compass; a shift that can happen every five minutes.

That shift in perception causes her to become disoriented and anxious. It's usually brought on by sleep or traveling along curves and angles, like the roundabouts in her neighborhood, or "Y" shaped hallways at Porter Hospital where she works.

She corrects the shift by spinning around with her eyes closed, which she says is very embarrassing.

"Getting lost every day is not exactly having a bad sense of direction but is something else," said Dr. Guiseppe Iaria, a neuroscientist at the University of Calgary.

He and a colleague were the first to document DTD early this year and identify three common symptoms: -You get lost every day in familiar surroundings -You have no other neurological condition or brain injury -You've had the condition since you were a child

So far Iaria doesn't know how rare the condition really is.

"In less than a year we have been contacted by 500 people and I would say about 400 of them most likely have DTD," said Iaria.

"It's so amazing, it's so validating to know that I'm not the only one," said Roseman.

Now through an online test and patient forums, Roseman has found a path that's taken her beyond decades of isolation and secrecy about her disorder.

"I don't feel like I'm this freak anymore that has to explain to people, oh can you tell me where the front door of my house is, because I can't find it right now," chuckled Roseman.

Since the disorder was identified less than a year ago, there is no known cause or treatment, but doctors hope to identify possible sources through MRI studies of patient brain function and structure.

If you would like more information on developmental topographical disorientation or to take the online test, click here. www.gettinglost.ca

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