Ep. 89 | Half a Face
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Wondery Plus subscribers can listen to new episodes of Mr. Ballin's Medical Mysteries early and ad-free right now. Join Wondery Plus in the Wondery app or on Apple Podcasts. One evening in May of 2006, a 15-year-old girl in suburban Maryland was picking out an outfit for a night out with friends to celebrate the end of the school year. But she was distracted by a dull throb in her jaw that had started a few days earlier with no obvious cause.

She took some aspirin, and when the pain eased, she returned to her closet and found a dress. But as she did her makeup in the bathroom, she noticed something strange in the mirror. No matter what expression she made, her face looked different. Her mouth was sort of crooked, straight on the left side but drooping on the right. It was like half her face was frowning, and the longer she stared, the less she recognized herself.

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From Ballin Studios and Wondery, I'm Mr. Ballin, and this is Mr. Ballin's Medical Mysteries, where every week we will explore a new baffling mystery originating from the one place we all can't escape, our own bodies. So if you like today's story, secretly spritz the follow button with a pheromone spray for attracting mating moose, then invite them on a camping trip out in the middle of the wilderness. This episode is called Half a Face.

One sunny afternoon in the fall of 2005, 14-year-old Nina Bellarmine returned home from her dance team practice and let herself into her house. She knew her mother, Jackie, was still at work, so she went to the kitchen to look for a note from her. And sure enough, there was a post-it note on the counter. It said that one of her mother's co-workers had called in sick, so Jackie had to cover for them. That meant she'd be working a double shift and wouldn't get home until after Nina had gone to bed.

But to make up for it, her mother had prepared one of Nina's favorite dinners that was in the fridge for her to warm up later. Nina was used to this routine and didn't really mind. Her mom managed a local bar in suburban Maryland, which meant she often worked late. So Nina had gotten good at taking care of herself. After finishing up her homework, Nina microwaved the dinner her mother had left for her and ate it while watching TV. After that, she went to take a shower. Standing under the hot water, she massaged shampoo into her hair and relaxed.

However, when she reached for the conditioner, Nina noticed a large clump of hair caught between her fingers. I mean, she was used to losing hair in the shower, but this was more than normal. She rinsed the hair down the drain and then reached up and began feeling along her scalp to see if there was something wrong with her head. And eventually, her hands touched something very strange. There was this circular, totally bald patch of skin on the right side of the top of her head.

Nina was totally shocked. She didn't understand how so much hair could have fallen out all at once. And so as she was grappling with this new information, she sort of leaned forward to let the water rinse off the bald spot. And as she did, another chunk of hair fell onto the ground. Nina practically screamed. She backed away from the water and turned off the shower. And then she looked down and saw the drain was completely clogged with her hair. Nina grabbed a towel and hurried to call her mom.

Around noon the next day, Jackie sat beside Nina in the lobby of the pediatrician's office, flipping through a magazine. Nina wore a scarf wrapped around her head to cover up her hair. When Nina had called her the night before, Jackie had assumed her daughter was just being dramatic. But when she finally got home from work that night, Nina was still awake and still in a panic. Jackie couldn't remember the last time she'd seen her daughter this upset. And then when Jackie examined her daughter's scalp, she instantly understood why.

The bald spots were disturbing. The areas weren't just patches of thin hair, the areas were completely barren. It was like entire areas of Nina's scalp had just abruptly died. Jackie had never seen anything like it before, so she had told her daughter that the next day they would go see the doctor. When the nurse finally called Nina's name, Jackie and her daughter walked back to an examination room. A few minutes later, the pediatrician arrived and Nina told him all about losing her hair in the shower.

The doctor examined Nina's head, tracing his fingers along the exposed skin of her scalp. And then after he was done, he simply patted Nina on the shoulder and told her not to worry. He said that her hair loss was actually most likely due just to stress. He suggested that Nina might be worrying too much about school or grades or her social life. But if she took it easy and relaxed, her hair would grow back soon and she'd go back to normal.

Now, Jackie hadn't noticed Nina seeming particularly stressed lately, but at the same time, she was very relieved to hear a doctor promise that there was nothing medically wrong with her daughter. One winter morning, three months later, Nina stood in front of her bathroom mirror, styling her hair. She heard her mom calling up from the kitchen to hurry up because they were running late for school. But Nina wasn't ready yet.

Despite what the doctor had said, Nina's hair did not grow back. In fact, it continued to fall out. Now she had seven bald spots across her head. They made her feel so insecure, and so most days she wore hats and scarves to cover her scalp up. However, her friends all noticed and asked her, you know, what's going on? Nina was always too embarrassed to tell them, but at the same time, she was also just plain confused. She didn't know what was going on. She didn't understand it at all.

The doctor had told her to just, you know, stress less, but how could she possibly do that when her hair was falling out in high school? After another 20 minutes went by in the bathroom, trying her best but really failing to arrange her hair to hide the bald spots, Nina finally just lost her patience. Nothing looked right. She couldn't go to school like this. Nina stormed out of the bathroom and told her mom that she needed to go back to the doctor.

Jackie put her coffee down and gave her daughter a long hug. And as she did, she told Nina she would set up another appointment with the doctor, and she promised they would figure out how to fix this. Nina was grateful for her mother's support, but at the same time, she felt so impatient and overwhelmed. She had never heard of something like this happening to other kids her age. It just didn't make sense.

Making it through high school as a teenage girl was hard enough already, and so adding in losing your hair on top of that was recipe for a disaster. A few days later, Jackie drove home from the doctor's office as Nina sat silently in the passenger seat. This visit had been a huge disappointment. The pediatrician had carefully inspected each of Nina's new bald spots, but once again, he promised there was nothing serious to worry about here, and his advice stayed the same. Nina just needed to stress less.

He told Jackie that her daughter's hair loss was simply a side effect of teenage anxieties. When the doctor said this, Jackie had watched Nina's face crumple with frustration. On the drive home, Nina begged her mother to let her drop out of school, but Jackie told her that that really wasn't actually possible. Practically speaking, Nina wasn't old enough to legally stop attending school, no matter the reason.

And also, Jackie reminded Nina that her education was more important than anything else, even if she had to suffer through some embarrassing hair loss. As soon as Jackie parked in the driveway, Nina jumped out of the car and ran inside. Jackie followed along after her and found her daughter on the couch with her head in her hands. Jackie sat down next to her and began to rub her back. She swore to Nina that everything would be okay eventually. They had navigated other challenges together and they'd find a way through this too.

but Nina didn't say anything. Instead, she pushed her mother's hand away, stood up, and stormed upstairs to her bedroom, slamming the door behind her. A couple of hours later, in an attempt to brighten her daughter's mood, Jackie ordered dinner from Nina's favorite pizza place. However, when she knocked on Nina's bedroom door with a couple of slices, Nina said she wasn't hungry. She said she was too depressed to eat and just wanted to be left alone.

Jackie spent the rest of the night thinking about how she could even help her daughter, but she just felt lost. Nina was more stressed now than Jackie had ever seen her. And so if the doctors were right that her condition was due to stress, well, then it was likely about to get much, much worse. A couple of months later, in January of 2006, Nina was in the school gym stretching before dance practice. She had spent the winter holiday basically avoiding all her friends because still her bald spots had not grown back.

She felt helpless and lonely and angry. But now school had started again, so she had no choice but to socialize. The dance team captain began to walk them through their new routine. But as they did, Nina couldn't quite get the hang of it. Her legs felt unsteady and she kept losing her balance. Then, while trying to do this new high-stepping movement, the right side of Nina's face suddenly rippled with pain. It hit her like an electric shock that was so strong, Nina almost fainted.

She walked away from the team as quickly as she could and just said she had to use the bathroom. But in reality, she went and just got her cell phone to call her mom. Her mother was at work, but when she heard her daughter, she said she would get someone to cover for her and she would come pick up Nina right away. An hour later, Nina winced with every step as her mom led her down the hallway of an urgent care clinic.

When the doctor entered their exam room, Nina described her symptoms: how she'd started losing hair a few months ago, and now the right side of her face stabbed with pain when she stepped too forcefully. The doctor listened, nodding every once in a while, and then conducted a thorough exam. After 15 minutes, the doctor told Nina that her pain was most likely being triggered by a migraine headache.

The bad news was that migraine headaches are notoriously intense, but the good news was that they're also pretty rare and don't last that long. And so he suggested she take some aspirin or ibuprofen to try to reduce the pain. When she got back home, Nina did take a few aspirin. However, that night when she was up in her bedroom, the right side of her face still tingled with pain.

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Hey, I'm Mike Corey, the host of Wondery's podcast, Against the Odds. In each episode, we take you to the edge of some of the most incredible adventure and survival stories in history. In our next season, it's 1980, and in the Pacific Northwest, the long, dormant volcano Mount St. Helens is showing signs of life. Scientists warn that a big eruption is coming, but a restricted zone around the mountain is limited by politics.

On May 18th, hikers, loggers, reporters, and researchers are caught in the blast zone as the volcano erupts. They find themselves pummeled by a deadly combination of scorching heat, smothering ash, and massive mudslides. The survivors have to find their way to safety before they succumb to their injuries.

A couple of weeks later, Nina was tilted back in a dentist chair with her mouth wide open. The dental technician instructed her to bite down on two small flat sensors. And then once she had, they aimed an x-ray machine at each side of her jaw, one after the other.

When the dental tech left the room after processing the x-rays, Nina's mom came close and squeezed Nina's hand. And Nina squeezed back. Over the past two weeks, the surges of pain in her face had steadily sharpened. And then the previous night during dinner, Nina was struck with a bolt of such intense pain through her face that she could barely open her mouth. It felt like her jaw was wired shut.

When Nina described this pain to her mother, her mother wondered if maybe Nina's migraines could have triggered some sort of nerve endings in her mouth. And so her mother immediately called the dentist's office emergency line and scheduled an appointment for the next morning. A few minutes later, the dentist walked in and examined Nina's x-rays on a computer monitor. He pointed to Nina's back teeth and said they were compacted and actually crushing one another. The dentist said her teeth were most likely causing all of Nina's symptoms, not migraines.

And so even though Nina did not have an explanation for why she was losing her hair, she was grateful to finally have an explanation for her pain. But unfortunately, the dentist said that Nina's teeth could not be fixed until her next growth spurt, which was the optimal time to fix problems like this. At that time, an orthodontist would be able to remove some teeth and size her for braces, which would better align the spacing between her teeth and reduce her pain.

The dentist told Nina that for now, the best thing she could do was just tough it out and be patient. When they left the dentist's office, Nina felt defeated. It was like every time she saw a doctor, they would all tell her the same thing, that somehow if she just waited, magically things would get better. And at the same time, her mom kept promising over and over again that they would find a way through this. But they weren't finding anything, and nothing was getting better. Nina didn't know how much longer she could keep waiting.

She felt like she was running out of reasons to even be hopeful. Later that year, around late July of 2006, Nina decided to go through her clothes for the upcoming school year, which was starting in a few weeks. Her last semester of the previous year had been physically and emotionally draining. Her bald spots still hadn't grown back and her facial pain was constant. And Nina now had alarming new symptoms.

She noticed that whatever was happening to her jaw had clearly begun to affect her face, too. Her mouth looked crooked, and the whole right side of her face seemed like it was kind of sunken down. Her mother swore that she was just being hypercritical of her appearance, like most teenagers were, and she promised Nina that to her, she looked as beautiful as ever.

But looking in the mirror, she felt anything but beautiful. Over the last few months, her life had been so stressful that Nina really hadn't been eating and she had lost some weight. And so she knew that was likely going to affect how her clothes fit her. But as she tried on one outfit after another, everything looked enormous on her. And so eventually, Nina went into her bathroom to step on the scale to see just how much weight she had lost. But when she read the number on the scale, she actually at first thought it was an error.

She got off the scale and checked the scale's batteries, then got back on again, but the number was the same. Nina had lost more than 30 pounds in the last few months. Nina stepped off the scale and moved over to the full-length mirror to study her reflection. And it was like suddenly she could see how she actually looked. To her right now, she looked completely gaunt and unhealthy. Her bones poked out of her skin.

But that was not the only problem. As she leaned closer to the glass, Nina could clearly see her face had changed even more. And not for the better. The right side of her face looked almost shrunken, like the skin and bones were literally sinking into themselves. Nina was horrified.

She thought about going and telling her mother, but her mom looked at her every day without saying a word. And the last time Nina had complained about her appearance, her mom told Nina that she was just overreacting. Now, her mom wasn't being rude about it, but Nina felt like she was being kind of dismissive, and so she didn't want to go through that again. Nina tried to stay calm, but she couldn't stop herself from spiraling into a very dark mood. Her sophomore year started in a matter of weeks, and half her face looked like it was dying.

Her hair she could at least try to hide, but not her face. Nina wanted to crawl under her covers and just disappear. A month later, in August, on a rare night off, Jackie was resting on the couch with dinner cooking in the oven when the doorbell rang. She got up and opened the door and welcomed in one of her oldest and dearest friends, Kendra, who was also Nina's godmother. Jackie gave her a big hug and then poured her a glass of wine. Kendra had not been over to visit for a long time, and so there was lots to catch up about.

Kendra had begun telling Jackie about her new job when suddenly Kendra froze mid-sentence and the smile drained from her face. Jackie looked and saw that Nina had just come down the stairs. It was the first time Kendra had seen her in over a year. Nina came in and gave Kendra a big hug too and Kendra asked Nina how her classes were going and caught up for a minute or two. Then Nina took a plate of dinner back up to her bedroom to eat while she finished her homework.

Once Nina's door had shut upstairs, Kendra grabbed Jackie's arm and whispered in a very worried voice that her goddaughter looked emaciated. She barely recognized her, and so she demanded to know what was going on here. For a minute, Jackie assumed Kendra must be exaggerating, but Kendra kept pushing. She insisted that something had to be seriously wrong with Nina. To her, the girl's face was visibly disintegrating.

Jackie didn't even know what to say, so she just stood there in silence. And so Kendra said, "Look, go get some old family photos. Let's look at some pictures of Nina from before and compare them to now." Jackie nodded and walked over and grabbed a few boxes of pictures in the hallway closet. Standing at the kitchen counter, Jackie thumbed through the images. And at some point, Kendra picked up a photo of Nina from middle school and she held it up for Jackie.

The picture was only a few years old. It was of Nina following a soccer game. She was smiling and sweating and holding a bottle of water. And when Jackie saw it, it was like suddenly seeing what her daughter's smile actually looked like flipped a switch for her. Jackie realized she hadn't seen that smile in a long time. In fact, she recognized now that her daughter's face did look completely different. And not in a good way. Something had changed. But she didn't know when or, more importantly, how.

Jackie also felt the sudden stab of shock as this realization sank in. She didn't understand why she hadn't been able to see or accept how dramatically her daughter had changed until right now. But at this point, it didn't matter. All that mattered was it was absolutely clear that something was wrong with Nina. Jackie needed to find someone who could help ASAP.

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About a month later, in September of 2006, Nina stepped off the school bus in front of her house and promptly went around the side to the backyard and sat alone under a tree. So far, her sophomore year had been even worse than she feared it would be. The kids at school stared and pointed at her. Everywhere she went, she felt like she was getting funny looks. Even her friends began avoiding her because they didn't know what to say to her. Nina heard a rumor going around that she'd been in this bad car accident and that's why her face looked so messed up.

Feeling self-conscious was bad enough, but Nina was also in more pain than ever. Her jaw throbbed with nearly every step she took, and now she also did have a very bad headache basically all the time. However, Nina was still waiting on the go-ahead from her dentist. Nina was so physically uncomfortable all the time that she could barely focus on what her teachers were saying in class. She knew her sophomore year was supposed to be a tough year, but not like this. Nina was miserable.

However, one silver lining was that her mother was now completely and totally on her side. Ever since that night Kendra visited, Jackie had taken Nina to every doctor she could find. They'd already visited five different specialists so far. Unfortunately, so far, those appointments had accomplished nothing. None of these specialists knew what was going on with her. They didn't even have a theory. They admitted that her face was developing in a pretty irregular way, but they didn't know why or when the sunkenness and drooping would stop.

After the most recent doctor's visit, Nina had had a meltdown. She felt broken. It was like she'd been cursed, and there was nothing anybody could do to reverse it. Nina sat in silence under the tree for a few more minutes until she heard the sound of her mother's car pull into the driveway, and then a moment later, she heard the sound of the back door swing open. Her mother walked out to the tree and sat down beside her, at which point Nina simply put her head on her mom's shoulder and began to cry.

A couple of minutes later, after Nina had stopped crying, she sat up and told her mother that she had made an important decision. And she really wanted her support, not an argument. She said that she needed to drop out of school. She just simply couldn't take it anymore. The mockery and the constant humiliation at school was so overwhelming, and the non-stop pain in her body just made her life constantly miserable.

Also, her social life basically didn't exist anymore. And in terms of being able to do the schoolwork, well, she couldn't even think straight or pay attention in class. She said at least if she was at home, she could suffer privately and with some dignity. She knew this was a big ask because education was a huge deal to her mother. But Nina promised that she would register to take the GED, which is the equivalent of getting a high school diploma, the moment she was qualified.

For a minute, Jackie didn't say anything. She just sat there in silence, holding her daughter's hands. Then she finally looked up at Nina and simply nodded. She said she understood and that she was proud of Nina for being so brave. She saw how much she was hurting. Nina immediately felt relieved, but also felt a fresh throb of pain in her jaw. Her life and her body were falling apart, but at least it wouldn't be happening in front of her entire high school anymore.

Three weeks later, Nina sat with her mother in the examination room of an oral surgeon named Dr. Greg Gibson. Nina had low expectations, but her mom convinced her that Dr. Gibson might at least have a suggestion on how to reduce Nina's jaw pain. Nina had gone back to see a regular dentist, but he would discover that her problem was even worse than the dentist had imagined.

Nina's teeth were pushing into each other and her jaw so sharply, he said that Nina actually needed oral surgery right now. There wasn't time to wait for the perfect moment. So he'd referred Nina to come see Dr. Gibson, who could make a more accurate diagnosis. A few minutes later, Dr. Gibson entered and introduced himself. Then he took a seat beside Nina and her mom and swiveled a computer monitor so they could both see the screen. Then Dr. Gibson clicked open a folder of dental x-rays that his assistant had taken a half hour ago.

Dr. Gibson scrolled through the images until he got to one that showed the right side of Nina's mouth. He moved his cursor along the top and bottom rows of teeth, which visibly looked like they were buckling into one another. Dr. Gibson told Nina that, unfortunately, she would need oral surgery, major oral surgery. The teeth on the right side of her mouth had been significantly damaged by the way they were pushing against one another.

Nina was disappointed, but not overly surprised. She knew her teeth were compacted already, and they were getting worse. She'd also felt the inside of her mouth changing over the past year, but hadn't known what to do about it. As Dr. Gibson clicked through the rest of the images, it was odd that the x-rays clearly showed the left side of Nina's mouth seemed totally different. The teeth there seemed to be growing fairly straight and normal.

Then, Dr. Gibson clicked open a composite image of Nina's whole head, and her head looked visibly lopsided, sort of shriveled on the right and normal on the left. Nina watched Dr. Gibson for a reaction, but he didn't look surprised. Instead, he had this look come over him like he suddenly understood something, and he turned to Nina and her mother, and he said, I think I just figured out what your diagnosis is.

Dr. Gibson correctly diagnosed Nina with a condition called Perry-Romberg syndrome. Its signature symptom is the gradual degeneration of half of a person's face. The disease is quite rare. Perhaps just a few thousand people in the entire United States have this condition. But the true frequency of this disease is not known because doctors so often misdiagnose it.

The clue that sort of put it all together for Dr. Gibson was Nina's dental x-rays. The fact that the majority of the damage to her teeth and jaw occurred on the right half of Nina's face was a clear red flag. But his suspicions were confirmed by Nina's bald spots, which corresponded with her impacted teeth. Most of Nina's bald spots were clustered on the right side of her head, where all the teeth were crushed together.

With Perry-Romberg syndrome, damaged nerve endings prevent proper blood flow to one side of the patient's head, which causes the muscle and tissues there to slowly die. Nina's scalp was the first area to decay, so that's why her hair began to fall out. Next, when the bones in the right side of her jaw stopped growing, her teeth started buckling inwards. Gradually, this started impacting other nerves in Nina's face, causing endless stabs of pain for the teenager.

Eventually, the entire right half of Nina's face began to shrivel and cave in. Unfortunately, there is no cure or treatment for Perry-Romberg syndrome. Typically, the condition stops on its own around the time patients reach their late 20s, but doctors still don't know why this is. And so until her late 20s, all Nina could do was try to manage her pain with a regimen of prescribed medications, try to be patient, and just wait for the syndrome to run its course.

Now that you've finished this episode, I know you will love what Luke LaManna is doing over at Redacted Declassified Mysteries. Go ahead and start with the episode titled The Secret of Churchill's Anthrax Island. It's a chilling tale of biological weapons and government secrets that's perfect for medical mystery fans just like you. From Ballin Studios and Wondery, this is Mr. Ballin's Medical Mysteries, hosted by me, Mr. Ballin.

A quick note about our stories. They're all inspired by true events, but we sometimes use pseudonyms to protect the people involved, and some details are fictionalized for dramatic purposes. And a reminder, the content in this episode is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

This episode was written by Britt Brown. Our editor is Heather Dundas. Sound design is by Andre Pluse. Our senior managing producer is Callum Pluse. And our coordinating producer is Sarah Mathis. Our senior producer is Alex Benidon. Our associate producers and researchers are Sarah Vytak and Tasia Palaconda. Fact-checking was done by Sheila Patterson.

For Wondery, our head of sound is Marcelino Villapando. Senior producers are Laura Donna Pallavoda and Dave Schilling. Senior managing producer is Ryan Lohr. And our executive producers are Aaron O'Flaherty and Marshall Louis. For Wondery. Wondery.

Medical mysteries fans, I've got a story that's right up your alley. In a recent episode of Redacted Declassified Mysteries, which was titled "The Secret of Churchill's Anthrax Island," host Luke LaManna reveals how Winston Churchill ordered a top-secret biological weapons program on a remote Scottish island during World War II. What began as a classified experiment turned deadly, and decades later, a mysterious group called "Dark Harvest" forced the government to confront its toxic past.

And this is just one of many declassified stories on this podcast called Redacted that will fascinate all you medical mysteries listeners. So go ahead and search for Redacted Declassified Mysteries wherever you get your podcasts. And remember, you can listen to both Redacted and Medical Mysteries early and ad-free with a Wondery Plus subscription.