“It’s like looking at demons”: discover rare condition that makes men see distorted faces

For 59-year-old Victor Sharrah, the terrible symptoms began on a winter day in Nashville, USA.

“I just woke up and was sitting on the couch watching TV when my roommate came into the living room and [olhando para ele] I thought, 'What am I seeing?' Then his girlfriend came in and her face was the same,” Sharrah told CNN .

Each of the once-familiar faces had a grotesque grimace, elongated eyes, and deeply etched scars. When turned to the side, pointy ears suddenly appeared, he said, much like those of Spock, the Vulcan first officer of the USS Enterprise in Star Trek.

“I tried to explain to my roommate what I was seeing and he thought I was crazy. Then I went out and all the people’s faces I saw were distorted and still are,” Sharrah said.

“It’s like looking at demons,” he added. “Imagine waking up one morning and suddenly everyone in the world looks like a creature from a horror movie.”

Sharrah has a rare condition called prosopometamorphopsia, or PMO, in which parts of other people's faces appear distorted in shape, texture, position or color. Objects and other parts of a person's body, however, typically remain intact.

“I helped create a computer-generated 2D image of what I see in faces, but there is much more to it than that,” said Sharrah, speaking of research into her case, published in The Lancet’s “Clinical Imaging” section.

“What people don't understand in an image is that the distorted face is moving, contorting, talking to you, making facial gestures,” he added.

“It kind of distances me from other people a little bit. I try not to because I know what it is, it's PMO. Even so, I still feel like I’m not getting as close to people as I used to.”

All types of distortions

Prosopometamorphopsia is different from “face blindness,” the condition shared by actor Brad Pitt, former Colorado governor John Hickenlooper, renowned neurologist Oliver Sacks, Crown Princess Victoria of Sweden and perhaps 1 in 50 people.

In face blindness, faces are not distorted; Instead, the brain simply has difficulty recognizing faces, even familiar faces – making almost everyone strange.

With PMO, however, a person will often have little difficulty recognizing a loved one or familiar face, but that face will be distorted, often in predictable ways.

“For me, the basic distortions are the same for each person, with the lines of the face, the elongation of the eyes and mouth, and the pointed ears,” Sharrah said.

“But the size and shape of a person’s face or head and the way they move can be different and change how distorted they can be.”

Some people with PMO see their own faces as distorted or even damaged. Two patients, “while standing in front of a mirror, saw an eye popping out of its socket and sliding down their cheek,” according to an April 2023 literature review.

For other people with the disease, like Victor, another person's entire face appears deformed, much like a “funhouse mirror,” according to a description in another published case study. Others see only half of their face as crooked or malformed.

After a tumor was removed from the left side of his brain, a patient described the right side of his face to his doctor in which the “eye had become a horrible hole and the cheek bone a cavity; he had teeth on his upper lip, he often had two ears.”

Others with PMO eloquently described the faces as “like clocks in a painting [Salvador] Dalí” or “changing kaleidoscopically”.

Still others have seen faces turn into dragons or fish heads, or ears pop out of the tops of people's heads. Some patients report seeing shortened arms attached to their faces, people's eyes coming out of the skull and rotating in front of it, or third eyes in the middle of people's foreheads.

“The woman who saw dragons started seeing them as a child, so there are cases of developing PMO where people grow up with the condition and don't know their faces are supposed to look different,” said Brad Duchaine, professor of psychology. and brain sciences at Dartmouth College in Hanover, New Hampshire, USA.

There are only 81 cases of PMO in published literature, according to a June 2021 review, but there are likely many more people living with the disease, said Duchaine, senior author of the Lancet case study.

“We created a website so people can learn about the PMO and we've heard from at least 80 people so far,” he said. “And we are finding that people all over the world are reporting the same symptoms without knowing anything about other people with the disease.”

With so little knowledge available, many people with PMO may be diagnosed with schizophrenia or other similar hallucinatory conditions and given antipsychotic medications or even institutionalized, said Antônio Vitor Reis Gonçalves Mello, a doctoral student in psychological and brain sciences at Dartmouth who is the first author of the case study.

However, science now knows that people can develop PMO after a brain injury, tumor or infection, or after seizures, as in epilepsy, he said.

“Good evidence is that in more than 50% of cases with half-face distortions, for example, the patient has damage to a certain part of the brain,” said Mello.

“In these cases, we are confident that they are not making it up, so when other people come forward and report very similar experiences, it seems unlikely that they are not being truthful.”

“Evil, twisted and demented”

Diagnosed with bipolar disorder as a teenager, Sharrah struggled with a mental illness that escalated into post-traumatic stress disorder (PTSD) after a stint in the U.S. Marine Corps.

“I was in Beirut on October 23, 1983 when they bombed our barracks. And whenever something goes wrong in my life, my biggest battle is with suicidal psychosis – it's the first place my brain turns,” he said.

As part of her fight, Sharrah is a longtime member of a suicide support group on Facebook. Increasingly fearful of what was happening to him after the distortions began, he posted his symptoms online.

“I feel like I’m shutting down. Like I'm dying inside. Every face I see that isn't on screen looks evil, distorted, and demented. I mean, it literally looks like something out of a John Carpenter movie,” he wrote in January 2020.

“I am becoming cold, hateful and indifferent. I don't know how to stop this. Maybe it's too late.”

In Casper, Wyoming, Catherine Morris was waiting for a meeting to start and happened to go on Facebook, where she was a volunteer with the same suicide support group.

Having worked in schools with visually impaired people for more than 30 years, she was familiar with how people sometimes saw visual distortions based on the way their brains perceived different colors and intensities of light.

“I saw his post appear and thought: what do I do? I can reach out and maybe help him, but I don’t want to give him false hope,” Morris said. “I told him he had to promise me one thing: As long as we worked together, he couldn’t get hurt.”

Morris knew from his training that such distortions could be triggered by a specific area of ​​the brain called the fusiform gyrus, responsible for facial perception, object recognition and reading.

Light distorts, so the solution, she thought, might be to find a specific color or intensity of light that could reduce symptoms.

“I bought one of the multicolored light bulbs with an app that Catherine was able to control in Wyoming,” Sharrah said. “Then we did a video call and did several tests.”

Fearing for his mental health, Morris asked Sharrah for his phone number and address before the tests because if “he got really upset, I would call 911.”

Then she made him look in the mirror while she manipulated the colors of the light.

“When I got to the wrong color of light, the red light that intensified the distortions, I watched it happen. He started having a full-blown panic attack. He withdrew from the screen and the expression on his face was quite horrified,” Morris said.

“I told him to close his eyes and remember this wasn’t real, his brain was tricking him,” she said.

“So I changed the light to green and asked him to open his eyes. He did so and the distortion disappeared. And he just stood there and cried like a baby.”

Overwhelmed by his success, Morris ordered a pair of tinted glasses in the appropriate shade of green. Knowing that Sharrah would soon see her estranged daughter and meet her grandchildren for the first time, she sent them away urgently.

“And they arrived the morning he met his granddaughters,” she said. “He met them for the first time and they seemed normal.”

Treatment

Today, Sharrah is working closely with Duchaine and Mello in their lab at Dartmouth, helping to test several interventions to alleviate or reverse the symptoms of PMO.

Research has doubled down on the benefits of green lenses in combating Sharrah symptoms and found that manipulating the colors in the lenses has also helped others with PMO – although the colors that work may be different.

Another promising treatment: showing people with PMO completely symmetrical faces, which appears to reduce distortion.

“If this holds up to further testing, perhaps glasses could be made to help people see faces more symmetrically,” Mello said.

But one of the biggest breakthroughs came when the team realized that Sharrah didn't see distortions in the 2D images.

“Most PMO participants will see distortions in faces in real life and faces in images, which prevented us from capturing exactly what they see,” said Morro.

“With Victor, we were able to get him to describe the face of a real person while [também] he looked at an image of her that we manipulated” until it reflected the distortions he saw.

The research is “a wonderful piece of work” and is the first time that an accurate illustration of PMO has been captured, said psychiatrist Jan Dirk Blom, who runs the Outpatient Clinic for Unusual Psychiatric Syndromes at the Parnassia Psychiatric Institute in The Hague, Netherlands.

For Sharrah, the research is a way to help save someone else from being misdiagnosed by doctors who are unaware of the rare syndrome.

“I was almost admitted to a mental hospital, and one of the people who went to Dartmouth was admitted for psychosis. How many other people are institutionalized and given antipsychotics when they are not psychotic?”