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Hey Prime members, you can binge episodes 41 through 48 of Mr. Ballin's Medical Mysteries right now and ad-free on Amazon Music. Download the app today. On a hot Sunday afternoon in August of 2016, a young man shuffled into his apartment, dropped his bag, and locked the door. He had gone to a Blink-182 concert the night before, but he was only now getting home. He went into his bedroom and changed into pajamas. Even though it was still light outside, he felt ready to call it a day.
He grabbed a blanket and stretched out on the couch to rest, and just as he closed his eyes, his phone rang. It was his father calling from Boston, Massachusetts, and he said he needed his son's help right now. Seconds later, that young man was up and sprinting out the door of his apartment, still wearing PJs. He jumped into his car and sped down the street.
Six minutes later, he skidded to a stop in front of an office building. He ran inside and waved at the security guard as he ran past the desk, shouting that he'd explain later, and then he ran all the way to the back of the building to a large, heavy safe locked with a keypad. He flipped open a panel and quickly punched in the password. Besides his father, this young man was the only one who knew this code.
Inside the safe, he grabbed a small box. Then he shut the safe, locked it, and ran back down the hallway, out of the building, back into his car. Then he drove like a man possessed to the Florida Hospital for Children, weaving around traffic, gunning through yellow lights, and totally ignoring the other drivers who honked at him. When he pulled up to the emergency entrance at this hospital, he glanced at the dashboard clock. He knew he'd gotten there fast, but he just didn't know if he'd been fast enough.
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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. If you like today's story, please invite the follow button over your house for a spaghetti dinner, but instead of serving them red sauce, just dump a whole bunch of ketchup on their noodles.
On this show, many of the stories we cover are about rare diseases that take people completely by surprise. But sometimes, a condition is so rare, so unexpected, it's hard to believe something like that even exists. But as the people in today's stories find out, they are all too real. On this episode, we have two stories about people who face overwhelming odds against rare, terrifying diseases.
Our first story is about a teenage boy whose family vacation to visit his favorite theme parks goes horribly wrong. Then you're going to hear about a young woman whose life is turned totally upside down by a minor kitchen accident. Here's our first story called Look Closely. On August 6th, 2016, Sebastian DeLeon was slumped in the backseat of a car heading to Orlando, Florida for a short vacation with his parents, Rafael and Brunilda.
The drive from their home in Weston, Florida was only about three hours. But to 16-year-old Sebastian, the trip felt much longer. He had a lingering headache and his eyes felt itchy and sensitive. He drank some water, rubbed his temples, and focused on the soft rumbling of the car. Sebastian wondered if his headache might be from getting too much sun the day before, since he'd spent the whole day swimming with friends in a lake.
But Sebastian worked most of the summer as a camp counselor, so he was outside all the time in the sun, and it never really seemed to bother him. So it didn't make sense to him why yesterday would be any different. Whatever the reason, Sebastian was just totally annoyed at feeling so out of it. He'd been looking forward to this trip to Orlando for weeks. Tomorrow, they had tickets to his favorite amusement park, and tonight they were staying at a nice hotel nearby.
It seemed like the perfect dose of late summer fun before school started next month, but Sebastian was worried that he might not feel well enough to even enjoy it. Sebastian groaned, made a pillow out of his duffel bag, and tried to rest. Maybe by the time they got there, the worst of this would be over. But a couple hours later, Sebastian's head was still pounding as his father parked in front of their hotel. Sebastian's parents unloaded the car, and then they all headed up to their room.
Sebastian's parents, Raphael and Bernilda, unpacked and got dressed for dinner, but Sebastian felt too dizzy to even think about food. So he crawled into bed and told his parents to go eat without him, he wasn't hungry. Sebastian curled up in the bed, put his blanket over his head, and hoped a good night's sleep would set him straight. But the next morning, Sebastian's head hurt even worse. And now his eyes were starting to ache as well. Even the soft glow of sunlight through the hotel window felt blinding.
Sebastian asked his mom to please shut the blinds, but she told him they were closed. Plus, it was cloudy outside. Brunilda sat next to him on the bed and put her hand on his forehead to check if he was feverish. Sebastian winced in pain when she touched him. His skin felt prickly and hypersensitive. Even the bed sheet against his body was very uncomfortable. Sebastian tried to sit up and get out of bed, but the covers suddenly felt too heavy for him to even move.
Sebastian felt confused and overwhelmed. He'd never felt so weak and uncomfortable before. It even felt hard to form clear thoughts. He heard his mom making a phone call, then his dad came in and sat beside him. Rafael told Sebastian they were going to take him to a nearby hospital. They had decided that his condition seemed too serious to wait until they got home to deal with. Sebastian's dad helped him get out of bed and get dressed.
When his parents opened the hotel room door, Sebastian moaned in pain from the light and turned away. Even with his eyes closed, the light felt almost unbearable. His dad pulled a pair of sunglasses from his shirt pocket and put them on Sebastian's eyes. Then he helped him walk unsteadily down the hallway towards the parking lot. The family reached their car and Sebastian crawled into the back seat. He heard his parents whispering to each other as they drove away from the hotel. Then Sebastian slipped into a haze.
That afternoon, a lab coordinator at the Florida Hospital for Children, named Sheila Black, was drinking coffee between tasks when she heard a knock at her door. It was an assistant nurse with a sample of spinal fluid and Sebastian's patient file. Doctors suspected the young man had meningitis, which is an inflammation of the spinal cord caused by a bacterial or viral infection.
One of its most revealing symptoms is sensitivity to light. To test for this disease, Sheila needed to examine the sample of Sebastian's spinal fluid. Sheila thanked the nurse, took the sample to a microscope, and squeezed a dropper of the fluid onto a slide. Then she slid the slide beneath the lens and adjusted the focus. The first thing she saw was that Sebastian's spinal fluid was clear, not cloudy. Spinal fluid is usually clear, but it turns cloudy when it's infected by meningitis.
Sheila made a note on the spinal fluid container that Sebastian tested negative for meningitis, but decided to keep studying his sample under the microscope a little bit longer. Overall, the sample looked the way it was supposed to. It was clear, colorless, and scattered with little white blood cells. And so Sheila really had no idea what could be making Sebastian so sick. She scanned through Sebastian's files looking for clues.
She noted his age, but then read further to where it mentioned Sebastian had gone swimming in a lake the day before his symptoms started. Going swimming in a lake was not unusual for a Florida teenager, but Sheila had recently attended a seminar about a rare type of microorganism that lives in warm freshwater lakes. When that microorganism enters the human body, it could cause an infection that seems like meningitis, but it's actually much worse.
An 11-year-old boy died from this microorganism infection at her hospital only two years before, and so Sheila had never forgotten how heartbreaking it felt to be so powerless as that young child slipped away. Sheila hoped her hunch was wrong, but there was only one way to find out. Sheila took another sip of coffee and then leaned in and peered into the microscope again. She stared at Sebastian's spinal fluid sample for a long, long time,
looking for one telltale sign. She couldn't allow a repeat of what happened last time. Then, suddenly, Sheila saw a flicker of movement in the sample. She blinked and looked closer. It happened again. A tiny bulge on one of the white blood cells wiggled. Maybe these were not actually white blood cells. They were something else. Something alive. Maybe they were the very organism she was afraid that Sebastian could have been infected by.
Sheila called Sebastian's doctor and told him what she'd just found. If this was what she thought it was, unfortunately, Sebastian was facing a death sentence. Sebastian's doctor, Humberto Liriano, slowly lowered the phone from his ear to his side and leaned his head against the wall. He felt crushed by Sheila's news. As a pediatrician who had treated some of the sickest kids, Dr. Liriano always tried to stay optimistic, even in the darkest times.
but sometimes it was hard not to feel totally defeated. If Sheila's finding was accurate, Sebastian did not have much of a chance. Dr. Liriano had treated this same infection four other times, and in all four cases, none of the patients survived. Still, he felt a deep sense of duty to never give up. No matter how unlikely Sebastian's chance of survival was, Dr. Liriano resolved to fight with everything he had.
He made some calls to get a team in place, and then he had Sebastian move to a room in the critical care unit, and then he went to study Sheila's lab results more closely. And right away, Dr. Liriano could tell from looking at Sebastian's spinal fluid that Sheila's fears were right. This was the worst-case scenario.
But there was one ray of hope. Dr. Liriano had heard of a new medication designed to combat Sebastian's condition with this microorganism. It was named Impavido, Spanish for undaunted. But there was a catch. The drug was still undergoing safety review. The makers of Impavido were still negotiating with the Food and Drug Administration for approval to get wider distribution. So very few hospitals were able to stock it, including the Florida Hospital for Children.
Dr. Liriano called the hospital's pharmacy. He told them he had a patient who urgently needed Impavido and to call everywhere until they found some. The pharmacist said they would and hung up. Dr. Liriano paced in his office trying to think of how else he might be able to save Sebastian in case he couldn't get this medication in time. He knew of other patients who had died waiting for it to arrive.
Just then, Dr. Liriano's phone rang. It was the hospital's pharmacy. They'd gotten in touch with the Centers for Disease Control, who had already tracked down the CEO of Impabito's manufacturer, which was based right in Orlando. And they apparently said that they had Impabito available and would be happy to supply the hospital with as much as they needed. Dr. Liriano felt a rush of joy at this news until the pharmacist finished their sentence. There was one problem.
Impavido was stored in a safe at the CEO's office, and the CEO was out of town. Dr. Liriano groaned in frustration. He asked how long it would be until the CEO could make it back to the office. If the medicine didn't make it to the hospital soon, it would be too late to save Sebastian. The pharmacist said the CEO was away in Boston, Massachusetts through the weekend. There was basically no way he could make it back in time.
But there was one other person who had access to the safe, the CEO's son, Michael. Not only that, but Michael was already on his way to get the Impavido for Sebastian. He would then personally rush it to the Florida Hospital for Children. Dr. Liriano was ecstatic to hear this, but none of it would matter if it took too long to deliver the drug. And so he asked where this office was to gauge how long Sebastian would have to wait, and
and the pharmacist's answer that the company's offices were only about 10 miles from the hospital nearly brought tears of joy to the doctor's eyes.
After he hung up with the pharmacist, Dr. Liriano ran to the ER. When he got there, he assigned a nurse to wait by the entrance for the CEO's son, Michael, and the second he got there, this nurse was supposed to take the drug from him and rush it up to the critical care unit where Sebastian was. But there was still one other task that Dr. Liriano had to complete before they could institute this drug.
and that was telling Sebastian's parents what was going on with Sebastian. Dr. Liriano steadied himself and then went down the hall to Sebastian's room. He peeked in at the doorway and saw Sebastian lying in bed barely conscious. His parents, Bernilda and Raphael, sat on opposite sides of the bed looking totally exhausted and terrified. Dr. Liriano stepped inside and then asked Sebastian's parents to please follow him out into the hall.
Dr. Liriano could see in the parents' faces how much they were dreading whatever he was about to tell them. Once they were out in the hall, Dr. Liriano explained Sebastian's situation as clearly as he could. He said their son had caught an infection caused by a microorganism while he was swimming, and now this infection had spread deep into his body and his life was in danger. When he said this, the parents' faces went white. They stared at Dr. Liriano blankly.
He told them the good news was that a new medication was on the way to the hospital this very second. The bad news was that Dr. Liriano had never been able to use this medication before, so he didn't know for sure if it would even work. Still, it was the best and potentially only chance they had against an infection with a very low survival rate. Only 3% of people who get this infection survive.
Dr. Liriano gave the parents a few minutes to absorb this terrible news. Then he explained that in order to use this new medicine, they would have to put Sebastian into a medically induced coma, taking him to the brink of death in order to save his life. So if they wanted to say anything to Sebastian, now was the time. There might not be a later. Bernilda and Raphael nodded and went back into their son's room.
They stood on either side of his bed and held his hands. His mother, Brunilda, cried as she told him what a perfect boy he was and that he was going to be just fine, medicine was on the way that would help him, and God was looking out for him. Sebastian's father, Raphael, made the sign of the cross and squeezed his son's hand. Then he leaned close to his face and told his son how strong he was, how he would beat this, and how they would all live a long happy life together.
Dr. Liriano was very moved by the parents and what they were saying to their son, but at some point he stepped in and asked Bernilda and Rafael to please leave the room, and then he had his nurses prep Sebastian for the medically induced coma, which required them to drastically lower Sebastian's body temperature.
The team jumped into action, prepping IVs and hooking Sebastian up to various monitors. Dr. Liriano made sure everything looked good and headed out to the reception desk to wait for the impavido. The whole floor was tense with anticipation. Then the elevator at the end of the hall dinged. Dr. Liriano heard rapid footsteps and suddenly a nurse sprinted around the corner holding a package. It was the impavido that Michael had brought.
Dr. Liriano looked at his watch. He had called the pharmacy less than half an hour ago. Sebastian still had a chance. He ran back to Sebastian's room and quickly opened the container holding the Impavido pills. Once Sebastian had taken them, an anesthesiologist sedated him. Within moments, Sebastian was asleep. A nurse gave him an IV drip of cold saltwater solution while another wrapped him in frozen blankets.
Dr. Liriano paced while keeping his eyes glued to Sebastian's monitor. This process would give the medication more time to work, but it was always very dangerous to cool a body so rapidly. Sometimes organs reacted very unpredictably. Within the hour, Sebastian's body temperature was down to 91 degrees Fahrenheit, and Sebastian was officially comatose.
Once Sebastian's breathing began to slow, Dr. Liriano gently fed a tube down his throat to help his body maintain a steady flow of oxygen. So far, the procedure had gone exactly as planned. All they could do now was wait and hope. The next morning, Dr. Liriano had some more of Sebastian's spinal fluid drawn to assess how the impobito was doing. He took the fluid down to the lab and studied it under a microscope. And when he looked, he let out a sigh of relief.
There were already far fewer tiny wriggling creatures in the sample. The infection had significantly reduced. By the following morning, Dr. Liriano was beginning to believe that Sebastian was actually going to make it. He found Sebastian's parents half asleep on a bench in the waiting room. They jolted awake when he spoke to them. Dr. Liriano told them he didn't want to celebrate too early, but so far, all signs were very positive. When the parents heard this, they cheered and hugged the doctor tightly.
But Dr. Liriano made it clear that Sebastian was not out of the woods yet. They still would have to bring him out of the medically induced coma. Dr. Liriano's team began steadily warming Sebastian's body. Minute by minute, his temperature rose until finally he was back at the normal 98.6 degrees Fahrenheit. Dr. Liriano then removed Sebastian's breathing tube and then hovered at his bedside, waiting.
Then it happened. Sebastian took a big gulp of air on his own, and his heartbeat remained steady. Sebastian was out of his coma. A little while later, Sebastian's eyes blinked open. He gazed around the room like he'd just woken up from a deep sleep. Dr. Liriano immediately sent a nurse to go get his parents. Brunilda and Raphael rushed inside and threw themselves on their son. Everyone in the room clapped, cheered, and hugged.
Dr. Liriano was ecstatic, but also stunned. This wasn't just a miracle, it made history. What Sheila Black found in Sebastian's spinal fluid should have killed him. It's a rare organism called Naegleria fowleri that lives in warm, stagnant waters, exactly like the lake where Sebastian had been swimming. When infected water goes up a swimmer's nose, the microorganism then travels through the body to the brain.
Once there, it attacks tissue, basically eating the victim's brain. This causes swelling that eventually shuts the brain down and the victim dies. That's why this organism is commonly known as the brain-eating amoeba. But what confirmed Sheila's hunch that this was a brain-eating amoeba was the organism's particular way of moving. It uses microscopic appendages to row itself like oars on a boat. That's why the microorganisms looked like they were wiggling under the microscope.
In 57 years of documented brain-eating amoeba infections, Sebastian had become just the fourth person in the United States to survive after being attacked by them. Dr. Liriano told Sebastian's parents that their son had been both horribly unlucky, but also at the same time extremely lucky. Because if the medicine that ultimately saved his life had been stored basically anywhere else, he probably would not have gotten it in time.
Of all the places in the world the medicine manufacturer's headquarters could be, they were also in Orlando, just a few miles from the hospital where Sebastian was. All told, it took less than 20 minutes for the CEO's son to rush and get the medicine and deliver it to the hospital. A few hours after coming out of his medically induced coma, Sebastian was able to speak again. It took two years for him to regain all his motor skills, but eventually he made a full recovery.
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And now for our second story, called Burning From the Inside. On a Sunday night just after Christmas in 2015, 27-year-old Kayla Hansen weaved through the crowded dining room of Grimaldi's, a popular Italian restaurant in Peoria, Arizona. The restaurant was unusually busy that night. As the manager, it was up to Kayla to keep things organized. So she was doing a little bit of everything, helping out the wait staff, checking on customers, and generally just making sure everything was running smoothly.
For someone less experienced, this whole night might have been totally overwhelming. But Kayla was a veteran and workaholic who regularly put in 60 or 70-hour weeks. She was totally in her element. Closing time was fast approaching, so Kayla grabbed an order of pasta and raced out of the kitchen.
As she crossed through the doorway, though, she let her guard down for a second and collided with one of her servers. The tray Kayla was carrying fell to the floor and Kayla staggered back into the doorframe and she grabbed the doorframe to steady herself. But before she could get her balance, the door swung back and smashed into her hand.
Kayla cried out in pain and yanked her hand back. The server apologized and ran to get some ice, but Kayla waved her away. She wasn't bleeding and she figured she just didn't have time to ice a minor injury like this. Kayla's hand was in a lot of pain and she could feel it aching right away, but she shrugged it off and helped the waiter clean up the food that had spilled. Then Kayla finished up her shift and headed home, ready to get some sleep. The next morning, Kayla woke up and felt a throbbing pain in her right hand.
She looked down and saw that it was totally swollen and the skin was bright red and tender. It didn't look good. Kayla groaned in frustration. She was supposed to meet her friends for a hike later, but as much as she wanted to ignore the pain in her hand, she knew she really needed to change her plans and go get her hand checked out by a doctor. So she texted her friends and said she would not be able to go on the hike that day, and then she called her primary care doctor and got an appointment for later that day.
By the time Kayla got to the doctor's office that afternoon, her hand was really hurting. But when the doctor examined her hand, he told Kayla she had just bruised the soft tissue. Her hand wasn't broken, so the swelling would eventually go down and she'd be fine. Kayla was totally relieved to hear this. It would have been extremely difficult to work at the restaurant with a broken hand. So Kayla figured she'd get better in a couple of days and really just kind of stopped thinking about her hand. It still hurt, but it didn't feel like an urgent matter.
Two weeks later, Kayla was in her bathroom getting ready for the day, trying to brush her hair with her uninjured left hand. Her right hand, the damaged hand, was still swollen and tender, even though it had now been two weeks since she heard it. The swelling really had not gone down at all, and the pain seemed to be getting worse every day. In fact, the pain had gotten so bad on several days over these past two weeks that she'd had to call into work sick.
Kayla could not afford to keep taking time off of work, so she was starting to feel really worried about her hand again. Kayla fumbled the brush and shook her head in frustration. Then, just kind of out of instinct, she picked the brush back up with her damaged hand. And as soon as she grabbed it, it felt like an electric shock ran up her right arm. Kayla immediately dropped the brush and then grabbed her injured hand.
She could feel the skin was incredibly hot to the touch and it almost felt like it was on fire from the inside out. It was so painful. And now also her right arm hurt too. And it was beginning to swell just like her hand. Kayla realized she just couldn't push through this pain any longer. It was horrible. And so she decided she would go back to her doctor.
Later that day, Kayla was in her doctor's office as the doctor was examining her swollen right arm and took Kayla everything she could not to scream out in pain every time the doctor very gently pressed her hand or arm. After the doctor finished his exam, he told Kayla that this was clearly more than just a bad bruise to her hand, but it was not clear to the doctor why Kayla was in this much pain.
Her tests and x-rays showed nothing was wrong with her. The doctor thought maybe it was something nerve related. So he referred Kayla to a pain specialist named Dr. Nicholas Scott, whose focus was on identifying and managing chronic pain conditions. Kayla very carefully cradled her right arm as she thanked the doctor and then she got up to leave. She hoped Dr. Scott would be able to help her because she really didn't know how much more pain she could bear.
A couple of weeks later, Kayla arrived at the Arizona Pain Clinic for her appointment with Dr. Scott. She hoped he would have an answer for her so she could get better and finally go back to her old life. Not only was she missing work all the time, but Kayla was also in too much pain to go hiking or fishing or really do much of anything that she used to do for fun.
Kayla waited in the exam room for a short period of time before Dr. Scott entered. His calm demeanor put her at ease, but she couldn't help but flinch when he examined her hand, which was still swollen and still had these bright red blotches all over it.
Once he was done, Dr. Scott asked Kayla if she knew what might have caused the injury. She told him about her busy night at the restaurant at the end of December and how her hand had gotten smashed in a door, but she didn't see how such a minor injury could cause this much pain and swelling in over such a long period of time. Dr. Scott nodded and told Kayla he could not find any tissue damage or broken bones just like her other doctor.
However, he believed she had developed a rare condition called Complex Regional Pain Syndrome or CRPS that can develop after there's been nerve damage. He explained that a nerve in Kayla's injured hand was misfiring and sending signals to the brain that she was in extreme pain even though the original hand injury was not that bad. Dr. Scott told Kayla that there was no cure for CRPS but they could find a way to manage the pain and the burning sensation until it went into remission.
Now, it usually went into remission after only a few months, but unfortunately for some, as the doctor explained, it could take a few years. Dr. Scott said they had no way of knowing which group Kayla would fall into.
Kayla was relieved that Dr. Scott had a diagnosis, but the possibility of living with such excruciating pain for years on end was terrifying. She just hoped that the doctors and her medical team could somehow get this pain under control and get her back to normal life soon. About nine months later, on December 16th, 2016, Kayla was in her kitchen struggling to cook some dinner. None of the pain treatments that Dr. Scott tried had worked.
Over the past few months, the horrible burning pain in her right hand and arm had spread across her feet, hips, knees, neck, even her head. Basically, Kayla felt like she was on fire 24 hours a day, seven days a week. Kayla had lost count of how many times she'd been to the emergency room, but no matter what the doctors tried, the pain never lessened. She could barely get out of bed, she'd had to quit her job, and now she was relying on her family to help her financially.
Kayla had worked so hard for so long to build her life, and now it was all crumbling all around her and it seemed like there was nothing anyone could do to help her. Even worse, really dark, depressing thoughts began to cloud her mind every day. All she wanted was for the pain to end, even if that meant falling asleep and never waking up again. But Kayla was determined to try to find some ray of hope in her life and she knew she got a lot of comfort from her family.
So she had decided to invite them all over for a Christmas celebration where she would prepare a meal for everyone. And as she struggled to clear some dishes from the counter,
Kayla happened to notice what looked like a fresh burn on her forearm. She tried to remember how she did this, you know, maybe she bumped into the stove or something and didn't notice, but she really had no memory of getting a burn. Thankfully though, the burn was small and didn't get any worse, and so Kayla was able to successfully host her Christmas party. It was only a small get-together, but the visit really lifted Kayla's spirits.
But on the morning of December 20th, so four days after that Christmas party where she noticed that burn on her arm, Kayla woke up to find that her forearm from hand to elbow was now completely covered with these small circular burns, just like the one she had noticed four days earlier. They looked like someone had stuck her with a white hot poker, leaving behind bright red blisters. But obviously that wasn't happening. These burns were somehow forming from underneath her skin.
Kayla was shocked and she lifted her arm up to get a better look. When she flexed it at the elbow, the movement caused the burns to crack open and start to bleed. It hurt so much Kayla couldn't even think. She immediately laid back down and kept her arm at her side to avoid causing any more damage. Horrible thoughts began to fill her mind as she lay there in bed that morning. Kayla imagined grabbing a sharp knife and just cutting her arm off to escape the pain. She kept thinking about the incredible relief that would bring her.
But then she realized cutting her arm off would be pointless because she knew from experience that these horrible pains she was experiencing would always eventually travel to the other parts of her body. Kayla gritted her teeth and then reached for her cell phone and called Dr. Scott.
He was astonished by her alarming new symptoms. People with CRPS did sometimes develop burns like this, but Dr. Scott knew that was incredibly rare. In fact, it happens so infrequently within CRPS patients that nobody knew how to make it stop. So for now, the only advice Dr. Scott could give was for Kayla to get to the emergency room and hope the doctors there could do something to treat her burns. When Kayla hung up, she just started crying.
She was in so much pain, she was so uncomfortable, and she knew that she was going to go to the hospital because she was going to do what she was told, but she knew they were not going to be able to help her. No one could. Kayla was right. The doctors at the emergency room when she got there were totally baffled by her condition. The only burns like this they'd ever seen were from cancer patients going through radiation treatment. Whatever was doing this to Kayla was coming from inside her, and they just couldn't explain it.
Kayla left the emergency room and headed home, still in total agony and feeling completely defeated. The days turned into months, the months turned into years, and at times Kayla's situation felt completely hopeless. Somehow she always found the strength to keep going despite the unbelievable pain she was always in.
By February of 2019, over three years after she crushed her hand, Kayla had gone to over 50 different doctors and had tried almost as many medical procedures, but nothing had worked. Finally though, on what felt like her millionth trip to the hospital for the burns that covered her body, the doctors were at least honest with her. They knew they couldn't help her, and they told her that. But they could at least tell her what was ailing her. She didn't just have CRPS.
she had the worst case of CRPS they'd ever seen and perhaps one of the worst the world has ever seen. Most people who suffer from complex regional pain syndrome have symptoms in a single arm or leg. Unfortunately for Kayla, she suffered from symptoms across her entire body. In other words, she had a unique version of this very rare disorder. One doctor described it as Stage 4, the most severe and painful form of CRPS.
Kayla had long since learned why doctors sometimes call CRPS the suicide disease, but the doctor spelled it out in agonizing detail. The pain experienced by victims of CRPS can be worse than childbirth, broken bones, or even amputations. The suffering can get so intense that up to 40% of CRPS victims express a desire to want to kill themselves to get rid of the pain.
Kayla winced at that last detail because she knew she fell into that 40%. She had had those dark thoughts. And in fact, lying in the hospital bed at that very moment, she couldn't help but think about dying and how really it would be so much easier to just die because then she wouldn't feel the pain and she'd stop being a burden to her parents and family.
over the next few days doctors and nurses streamed in and out of kayla's room really just to see the patient with the extraordinary case of crps some even took pictures of her just for documentation kayla started to feel like she was not really a patient and more of an animal in a zoo exhibit then eventually kayla's doctors discharged her from the hospital after this latest flare-up subsided but they were unable to offer any further relief from her crippling full body pain
A short time after Kayla returned home after that millionth visit to the doctor, something remarkable happened. All of a sudden, for no clear reason, the pain just started to lessen. At first, Kayla hardly noticed, but by April of 2019, she felt noticeably better. By the end of the year, she was no longer covered in those burns and was feeling almost like her old self again.
Finally, after almost four years of just pain and misery and torture, Kayla's nervous system had healed enough to properly transmit signals to her brain, which meant she was more or less back to her normal self. Although her CRPS will never be completely gone, Kayla was able to return to an active life. She went back to work at a restaurant, and she was recently honored with an award for excellence as a manager.
From Ballin Studios and Wondery, this is Mr. Ballin's Medical Mysteries, hosted by me, Mr. Ballin. A quick note about our stories. We use aliases sometimes because we don't know the names of the real people in the story. And also, in most cases, we can't know exactly what was said, but everything is based on a lot of research.
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 and Tanner Marciachello. Our editor is Heather Dundas. Sound design is by Matthew Cilelli. Coordinating producer is Sophia Martins. 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 Ballin Studios, our Head of Production is Zach Leavitt. Script Editing is by Scott Allen and Evan Allen. Our Coordinating Producer is Matub Zare. Executive Producers are myself, Mr. Ballin, and Nick Witters. For Wondery, our Head of Sound is Marcelino Villapondo. Senior Producers are Laura Donna Pallavoda and Dave Schilling. Senior Managing Producer is Ryan Lohr. Our Executive Producers are Aaron O'Flaherty and Marshall Louis for Wondery.
He killed at least 19 people during the 1980s in South Africa. Very dark times. People were desperate. We were looking for him. We couldn't find him. And nobody knew where he was. Every single one of his victims was black. He reached such a stage where he was now hunting. World of Secrets from the BBC World Service. Season 3, The Apartheid Killer. Search for World of Secrets wherever you get your BBC podcasts.
