National Aphasia Awareness Month: Drawing attention to a disorder affecting language abilities

June is National Aphasia Awareness Month, raising awareness of a disorder that affects a person's ability to speak, write, and understand both spoken and written language.

Aphasia affects more than 2 million people in the U.S., yet data show nearly 85% of the population has never even heard of it.

Aphasia is caused by brain damage, which in turn is most often caused by a stroke. It can also be caused by a traumatic brain injury, or can progress gradually from a slow-growing brain tumor, the Mayo Clinic explained. Actor Bruce Willis is among those who suffer from aphasia, in his case caused by frontotemporal dementia.

"It is a language problem — it affects reading, writing, as well as spoken language," Dr. Leora R. Cherney, director of the Center for Aphasia Research & Treatment at the Shirley Ryan AbilityLab. "So just imagine if you were not able to think about the words you wanted to say — you couldn't take the words and put them into sentences. Imagine if you were not able to read the headlines of your local newspaper. Imagine if you couldn't text your friends or even your grandchildren."

Cherney explained that people suffering from aphasia are aware of the fact they're struggling. But the disorder may cause them to speak in short or incomplete sentences, speak in sentences that don't make sense, speak unrecognizable words, face difficulty finding words, and fail to understand other conversations.

"There's also with people with aphasia, there's a sense of loneliness, and depression is high in people with aphasia," Cherney said. "Aphasia has actually been called an identity issue — an identity theft — because much of how we communicate relates to who we are, and it relates to our identity. So 'identity theft' has been a way that people have described what it's like to live with aphasia. They've lost their identity."

In addition to the horror of having to live with such an impairment, people with aphasia also face great difficulty in returning to life before the disorder, Cherney explained. Most do not return to work.

The Center for Aphasia research and Treatment at the Shirley Ryan AbilityLab is dedicated to improving life for those suffering from aphasia.

"We want to help them regain communication, get back into activities that are important to them, and regain their identity — or change their identity to make things meaningful for them," said Cherney.

The center undertakes research projects on everything from intensive therapy programs to software for aphasia treatment. The center also runs clinical trials — currently including a research study on neurostimulation for treating post-stroke aphasia, a trial of an online communication training program, and research on loneliness interventions.

The Center for Aphasia Research & Treatment at Shirley Ryan is celebrating 25 years in operation this year.