FORT WAYNE, Ind. (WANE) – It sounds like something out of a bizarre medical movie drama: people suddenly speaking with a foreign accent. Foreign Accent Syndrome is a very rare speech disorder. It can happen after trauma to the brain, like a stroke.
“Their ability to control their speech quality changes. Or they lose that ability,” Dr. John Collins, a neurologist with Dukes Medical Group, said.
Julie Frazier suffered from hemiplegic migraines, which are very severe and can cause temporary paralysis. Then in 2008, she had a really bad episode and developed Foreign Accent Syndrome (FAS).
“I could hear the nurses laughing in the hallway because they didn’t think that it was real,” Frazier said.”There is very much a disconnect between the brain and what the facial muscles are doing.”
It took her three years of fighting doctors and trying to convince them that she wasn’t making up her accent before she was finally diagnosed by Dr. Collins.
“It was a relief. It was validation,” she said. “We know it’s not being treated properly by the medical community and people are being thrown way off base. They’re going through hell trying to get a diagnosis. They’re putting them through unnecessary testing and not believing them and making them feel horrible.”
Ann Cavaliere had a similar experience. Eight years ago she had a complicated migraine episode while at work. She woke up in a hospital.
“I was speaking, but with an accent and have been speaking with one ever since,” Cavaliere said.
Cavaliere’s accent is often described as Eastern Eurpoean.
“Most people ask me what country I’m from because they can’t figure it out. That’s because English is my native language and I am now speaking it with a foreign accent,” she said.
Like Frazier, Cavaliere was passed around to many different doctors and therapists before she was diagnosed with FAS.
“We’re not crazy. It’s very upsetting to constantly be doubted because of the way I speak. I want people to know we’re not faking it,” she said.
Dr. Collins said FAS is under-diagnosed, partly because of a low-awareness in the medical community.
“As physicians, we need to be more aware because once you get into a pattern of doing things you forget other things. The awareness helps. Not just patient awareness, but provider awareness,” he said.
There are only a few hundred documented cases world-wide, but as more physicians put FAS on their radar as a possible diagnosis, that number could go up. Advances in medical technology could also lead to a higher case count.
“Neurologists don’t believe what they can’t see. If a neurologist doesn’t see any damage, they’re very apt to say it’s psychological. The problem is in car accidents and some traumatic brain injuries, it’s difficult to see brain damage,” Jack Ryalls, Ph.D. said.
Ryalls has studied FAS for decades and is a professor at the University of Central Florida. He is also publishing a book about FAS. He said a newer neuro-imaging scan called Diffusion Tensor Imaging could be a game-changer.
“Unlike a traditional MRI, it allows you to view problems in connections between areas in the brain. It uses the transmission of water molecules in the neurons. A healthy neuron is smooth and doesn’t show a problem. A neuron that has been frayed or sheered or has problems then the transmission of water molecules also becomes disrupted. You can use this to see problems in connections between areas of the brain that typical MRIs do not reveal,” Ryalls said.
Living with FAS can be very traumatic and having a hard time getting a diagnosis can only add to the isolation some patients feel. Both Frazier and Cavaliere have worked very hard to accept how they sound now.
“You have to work really hard on staying upbeat about things, especially when you have people who are accosting you because you speak differently,” Frazier said. “It’s amazing how many xenophobes there are.”
Many patients with FAS go through an identity crisis.
“It not feeling like you’re in your own skin anymore. I’m not the same person I was. I went through a definite grieving period of loss of identity. Having the condition is bad enough, but having all these naysayers and having doctors against you makes it very difficult to survive,” Frazier said.
While sounding like they have a foreign accent is an obvious side effect of FAS, there are others. Frazier said she is often left reaching for words.
“It’s not that we’re slipping. It’s that we can’t get the right word. It’s not there. There’s a blank spot. There are difficulties with organizing things or putting them into categories,” she said.
Cavaliere still gets emotional when she thinks about how much she struggled before she got her diagnosis.
“Medical professionals have actually laughed at me and mocked me,” she said. “I just want the medical profession to take it more seriously and treat the patients they have or come across with it. Treat them with dignity and respect. Don’t dismiss them.”
When she watched a video she made 15 years ago when working for a staffing agency, she was brought to tears.
“It’s a different person,” she said. “Not only the accent, but everything that has happened since. That person is happier than the person I am now.”
Because of FAS and other medical issues, Cavaliere can only work part time now and is on disability. It’s a situation in which she never thought she’d be.
“I wish I could go back to working full time and taking care of myself. When you’re on assistance there’s a stigma that goes with that too,” she said.
Cavaliere will still have the seizure-like episodes that prevent her from working full-time. She also struggles with some memory issues.
It was a long road for Cavaliere and Frazier to come to terms with their new voices and identities, but as they learned to cope, they also grew more used to telling people about their disorder. They hope they can spread awareness that will lead to better diagnosis and an easier road for future patients.
“I believe it’s going to be diagnosed more and more as we go along and eventually it will be accepted more than it is today,” Cavaliere said.