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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. A middle-aged doctor sat with his feet dangling off the side of a hospital bed. For the first time in a while, he was the patient, and he was terrified. One of his friends sat beside him, holding his hand for support. On his other side, a hospital physician was focused on a long, thin tube coming out of the patient's back.
The patient tried to relax and take deep breaths, but it felt like something was pressing in on his lungs, making it nearly impossible to breathe. He did his best not to panic, but it felt like he was drowning in his own body. Then the hospital physician turned on a machine and as it began to whirr, the pressure in the patient's lungs began to go away. And so the patient turned around to kind of see how it was going and he saw there was this thick yellow fluid coming out of his back that was going up and out this tube.
In over 15 years of this patient practicing medicine as a doctor, he'd never seen anything like this before. And so he turned to the hospital physician and he asked her what was causing this strange fluid to build up around his lungs. And with a look of absolute uncertainty on her face, she shook her head and said she didn't know. But she didn't have time to worry about where all the fluid was coming from. She just needed to get the fluid out of her patient before it killed him.
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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, be sure you go over to the Follow Buttons house and rile up their brand new puppy right before bedtime. This episode is called Family Ties.
Dr. Bill Linder groaned as he dragged a suitcase up the stairs of his house in Columbus, Ohio. It was June of 1990, and the 43-year-old doctor had just returned from a family trip to Israel with his two teenage daughters. The vacation had gone smoothly until one of their relatives got seriously ill. Bill's wife stayed behind to care for their family member while Bill and the kids returned back home.
As he struggled to get his heavy luggage up each step, Bill could hear his daughters, 15-year-old Jocelyn and 16-year-old Hillary, running down to the basement to watch a movie. He couldn't believe they could keep their eyes open. After a two-week trip, an international flight, and a long drive home from the airport, he felt exhausted. When he finally reached the upper landing, Bill headed straight to his room and collapsed into bed. But as soon as he took off his socks, he noticed his ankles looked swollen.
Bill wondered if he'd accidentally injured his ankles by walking too much on vacation, but when he felt around the joints for sore spots, they didn't hurt. So, Bill figured the swelling must be a result of too much sitting during the long international flight. Bill stood up and walked into his bathroom and grabbed a bottle of diuretic pills out of his medicine cabinet. He took one, hoping it might reduce the fluid buildup in his body. Then Bill crawled back into bed, desperate for a nap.
Less than an hour later, Bill woke up. He still felt tired, but it was getting close to dinner time and he knew his daughters needed to eat. So he threw the covers back and got out of bed. Bill walked out of his bedroom, intending to walk down to the kitchen, but as he stood at the top of the stairs, he started to feel lightheaded. His vision went blurry and his ears began to ring. He reached out to grab the stair railing for support, but he missed and instead of catching himself, he fell face first into the metal rail.
For a moment, everything went black. Then Bill heard Jocelyn and Hillary running up the stairs, followed by their frantic voices asking if he was okay. Bill slowly opened his eyes. He realized he was lying at the top of the stairs, and he felt this warm, wet liquid dripping down his temple. He touched the side of his head, and when he looked at his fingers, he saw they were covered in blood. He turned to his side and saw both of his daughters staring at him, their eyes wide with terror.
Bill slowly stood up, holding onto the railing this time, and promised Jocelyn and Hillary that he was okay. His head was just throbbing from hitting the railing, but other than that, he felt okay. He said he must have just gotten up too fast. The girls insisted on taking Bill to see one of the doctors at his family practice. Bill didn't want to leave the house, but he figured if a quick checkup would put his daughter's minds at ease, then it was worth it.
When they got to the family clinic a few minutes later, Bill could tell his colleagues were shocked to see him with dried blood caked onto his cheek. Luckily, the visit was short. The physician on duty cleaned Bill up, gave him seven stitches, and then just sent him home.
Two years later, in the summer of 1992, Bill and his favorite nurse, whose name was Kim, were closing up the family clinic for the day. Bill had not had any more health scares since his fall two years earlier, so in that time he'd just been focusing on spending time with his family and continuing to expand his medical practice.
Though it was getting close to dinner time, Bill did not need to rush home. His wife Rhoda was out of town and the girls were going out with their friends. So he and Kim took their time wiping down countertops and restocking the exam rooms, chatting and drinking a couple of beers that Bill had stashed in the office refrigerator. Bill and Kim finally headed out to the parking lot at about 7 p.m.
And as the two of them walked across the concrete, Bill suddenly started to feel short of breath. He'd only gone a few dozen yards, but he felt like he'd just sprinted a mile. He stood still and tried to stop panting, but inhaling just kept getting harder and harder. Kim put her hand on his shoulder and gave him a very concerned look. Bill turned to her and just said, "I need to go to the hospital." Kim sped Bill to the nearest emergency room, and when they got there, Kim helped Bill shuffle up to the front desk.
In between labored breaths, he told the receptionist that he could barely breathe, but since he was a doctor, he knew what he needed. He asked to have a chest x-ray as soon as possible. Less than an hour later, Bill was lying on a hard bed in a hospital room, still struggling to inhale while Kim coached him through each breath. Finally, a radiologist entered the room with the x-ray results, and Kim helped Bill sit up so he could see. But what Bill saw on the x-ray film seemed impossible.
Normally, lungs appear dark on an x-ray, but Bill's looked white. Now, Bill was not a lung specialist, but he'd known since medical school that this was a sign of fluid building up around the lungs. In severe cases, there can be so much liquid in the chest cavity, the lungs can't inflate properly, making it difficult or even impossible to breathe.
Looking at the x-ray, Bill felt genuinely frightened. Now he understood why he was so short of breath. But what he didn't understand was why all this fluid was building up in the first place. It usually only occurred in patients who were elderly or extremely sick with things like pneumonia or cancer. Bill was 45 years old and careful about his health. He watched what he ate, exercised every day. He had no chronic illnesses, and so this just didn't make sense.
Bill asked the radiologist what could be causing this, and the young woman said she didn't know. They would need to run tests to find the source of the fluid. Right now, the best thing they could do was just drain the liquid out of his chest cavity using a procedure called tapping. Bill dreaded the sound of that word. He knew exactly what tapping was, but he had never thought he'd have to experience it himself. It was a crude, unpleasant procedure, and the worst part was, Bill would be wide awake for the entire thing.
Half an hour later, Bill was sitting shirtless on the edge of his hospital bed while the attending physician sat on a stool beside him. She disinfected Bill's back, then injected a local anesthetic near the rear of his ribcage. Bill's back quickly went numb, but that did not make him feel any less afraid, and so he reached out for Kim, who was still there to support him.
Bill wanted to close his eyes for the next part, but he was too terrified to look away. He watched as the physician brought a long, thick needle towards his back. Then he felt a dull pressure as she plunged this needle between his ribs and pushed it deep into the space surrounding his lungs. Then the attending physician attached the opposite end of this needle to a thin tube, which led to a clear plastic container.
As Bill squeezed Kim's hand and tried to relax, liquid began to drain out of his chest. Bill hoped the liquid would be clear or tan, because those were the most common colors of fluid in the chest cavity, and he didn't want to see any red tint, which could mean he was bleeding internally. But the fluid Bill saw coming out of his back and going up this tube was not clear, tan, or red.
It was a thick, milky, yellowy substance that reminded him of the filling inside of a lemon meringue pie. He sat there watching this weird, gross liquid flow through the tube until an entire liter had been drained from the area surrounding his lungs. Finally, Bill felt a dull ache as the attending physician removed the needle and then covered the puncture hole with a bandage. Bill released his grip on Kim's hand and then asked the attending physician, you know, what just came out of my body? What was that?
She told him that the thick, milky fluid he was seeing was known as chyle, which is a mixture that includes fluids from the body's immune system. When a person has an infection, these fluids will flood the infected area, but they normally disappear after the infection is gone. The doctor told Bill that his body was not draining these fluids correctly, and it was causing a fluid buildup known as lymphedema.
Now that Bill thought about it, lymphedema could explain the swelling problems that he had been experiencing for years. He thought that his badly swollen ankles a couple of years ago were caused by the long flight home from Israel, but now he realized it could be from something much worse.
Because it wasn't just swelling in his legs and ankles. His body was leaking fluids into the space around his lungs, which was really baffling. His doctor agreed that Kyle should never leak into the body like this. She said she had only ever seen that happen in cases of liver failure, certain cancers, and in heart disease.
When the doctor mentioned heart disease, Bill remembered something. As a child, he'd been diagnosed with a heart murmur, a tiny sound that indicated a serious problem with his heart. Bill had undergone open-heart surgery to correct the murmur when he was just 12 years old. Since the operation, Bill had not had any cardiac problems, but now he wondered, could his childhood illness be connected to the symptoms he was experiencing as an adult?
The physician said it was possible, but she also told him not to panic. They wouldn't be able to determine exactly what was happening until he underwent a series of tests. Until then, he should just stay calm and not jump to any conclusions. Bill promised he would try, but he couldn't shake the feeling that his heart could be failing him.
Over a year later, in 1994, Bill held onto his wife's arms as she slowly lowered him into the bathtub inside their room at a Boston hotel where they had been staying for months. They were visiting the doctors who had treated Bill's heart as a child, plus many more specialists throughout the city. They were hoping to find someone who'd be able to make sense of Bill's bizarre symptoms.
While Bill's wife, Rhoda, scrubbed his aching back with a sponge, Bill thought about all the tests he'd undergone. Multiple cardiologists had examined his heart and they had all said the same thing, that it was functioning totally normally. So whatever was happening to him, it couldn't have anything to do with his heart or with the surgery he'd undergone as a child.
There was also nothing wrong with his kidneys or his liver or his immune system. What's more, he didn't appear to have cancer. Based on the test results, Bill should have been perfectly healthy, but he wasn't. The space around his lungs continued to fill with Kyle, making every breath a struggle. His back was scarred from repeated tapping procedures to drain the fluid.
Bill looked down at his stomach, which had become round and hard as a rock. This was a relatively new symptom, but it bothered him the most. Doctors told him that his stomach, his gut, was also filling up with Kyle, which was even more worrisome than what was happening with his lungs.
There were other alarming developments too. When Bill ate, the protein and fat in his food was not being processed correctly. Instead, it was leaking out of his intestines and mixing with his blood and other fluids. These were the ingredients in the kyle that kept building up inside of his body. As a doctor himself, Bill knew how serious this was. It meant that his body was not getting the nutrients it needed.
With his wife's help, Bill climbed out of the bath, put on his pajamas, and got into bed. He closed his eyes, feeling absolutely miserable, and did his best to sleep. A few hours later, Bill woke up shivering and covered in sweat. He knew he must have a fever, so he shook his wife's shoulder to wake her up. Rhoda took one look at him and said they needed to go to the hospital right now. Bill held onto his wife as she helped him hobble out to the car, and then before he knew it, they were already at Brigham and Women's Hospital in Boston.
Bill was too feverish and confused to check in, so he collapsed into a waiting room chair while his wife spoke with the receptionist. A few minutes later, a nurse brought Bill a wheelchair and wheeled him down the hall. By the time they made it to the examination room, Bill could barely speak and his vision was blurry. He was vaguely aware of a doctor coming in to examine him, and then he heard that doctor say that Bill would need to go to the intensive care unit.
Bill turned his head to the side. Through the haze of his vision, he could see his wife anxiously holding her hands in front of her chest. He tried to wave to her, as if to tell her everything is going to be okay, but he was too weak to even lift his hand.
Early the next morning, one of Bill and Rhoda's daughters, Jocelyn, walked through the large glass doors of Brigham and Women's Hospital. Jocelyn was now 19 years old and a college student right here in the Boston area. She'd been up very late the night before, but the moment her mom called her and told her that her dad was in the hospital, she'd gotten out of bed early and driven straight here from her dorm room.
Despite her exhaustion, Jocelyn's nerves had her all wound up. She couldn't stop thinking about her father's illness and she constantly felt anxious. She'd been skipping classes lately and partying too much, doing her best to distract herself from her dad's problems.
When Jocelyn walked inside of her father's room, she saw her dad lying on the hospital bed with tubes coming out of his arms and it made her feel even worse. He looked old and frail. She gave him a gentle hug and then sat down on the couch next to her mom and her older sister. Jocelyn's mother explained to her that her father had contracted a staph infection, which is a dangerous type of bacterial infection in the blood. He had likely gotten it during one of his many tests or fluid draining procedures.
Jocelyn sighed. Her dad was already so sick and this felt like one more health problem to add to the list. It felt like they were all just kind of waiting around powerlessly praying for something to change.
Just then, Jocelyn heard the door to the room creak open and in walked her great-aunt, whose name was Joni. Joni lived in New York and so the family did not see her much. But Joni skipped past the usual greetings and instead she walked right up to Bill's hospital bed and held out a dusty three-ring binder. Joni said she knew what was wrong with Bill. She said that she had seen all of his symptoms before in her own husband, Bill's uncle. All the proof was right here in the binder she had brought.
Jocelyn nearly jumped out of her seat. Maybe Joanie really was carrying the breakthrough the family had been hoping for. Jocelyn assumed her father would be excited too, but he immediately waved Joanie off. He told her that the two cases were not similar at all, and so he didn't want to hear anything else about his uncle Nathan.
Confused, Jocelyn pulled her great-aunt out of the room and into the hallway and asked to look at the binder. Jocelyn realized these were her great-uncle's medical records. Nathan had died over 30 years earlier in 1961 and these documents detailed the illness that killed him.
Jocelyn's great uncle Nathan had suffered from lymphedema in his ankles just like Jocelyn's father. Doctors also reported heavy chyle buildup in Nathan's chest and abdomen that needed to be drained repeatedly from his body. He'd even been diagnosed with a heart murmur. To Jocelyn, it did all sound very similar to her father's condition. When Jocelyn looked back up at her great aunt, Joanie seemed kind of apologetic.
She said her husband Nathan had died a very long and painful death, and so she assumed that Bill refused to believe he might have the same condition because he couldn't bear to imagine dying the same way. Jocelyn nodded somberly, but inside, she was thinking that this information could be the key to actually helping her father. She told her great-aunt they needed to show these records to her father's doctors right away.
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The same day that Bill was admitted to the ICU, Dr. Christine Seidman was eating lunch in her office at Brigham and Women's Hospital. As she ate a forkful of leftovers, another doctor came inside and placed a three-ring binder on her desk. They said it had to do with an ICU patient named Dr. Bill Linder.
Dr. Seidman swallowed her food and then tucked her short black hair behind her ears. She looked over the documents while her colleague briefed her on Bill's condition. They explained the striking similarities between Bill's symptoms and his uncle's. Dr. Seidman immediately knew this case was right up her alley. In addition to being a cardiologist, she was a geneticist. Dr. Seidman knew that if anyone could solve this mystery illness, it was her. She jumped up from her desk and headed to the ICU.
A few months later, in early 1995, Jocelyn sat on an exam table in the Brigham and Women's Hospital as Dr. Seidman rubbed cold gel across her skin and then pressed an ultrasound scanner against Jocelyn's chest. Dr. Seidman was performing something called an echocardiogram or an ultrasound scan of Jocelyn's heart. The pressure of the plastic scanner hurt, but Jocelyn was too anxious about what the scan might reveal to worry about the pain.
Ever since Dr. Seidman began looking into Bill's illness, she had been working closely with Jocelyn and the rest of the Linder family. Her goal was obviously to cure Bill, but to do that, she first had to identify his condition. She'd interviewed the Linder family and collected medical records going back generations. And she'd kept Jocelyn up to date on all her research, which was why Jocelyn knew how important this scan was.
Dr. Seidman found that Jocelyn's father and great-uncle were not the only ones who suffered from this mystery illness. Jocelyn's great-grandmother, May, had had it too. The disease appeared to be hereditary, which meant it was getting passed down generation to generation.
When Dr. Seidman had called Jocelyn in for this appointment, she explained that all three of Jocelyn's relatives who had dealt with this mystery illness, so her dad, great uncle, and great grandmother, had the same symptom first: a heart murmur. The doctors who had been treating Bill until now thought his childhood heart condition was totally irrelevant, but Dr. Seidman had discovered that it was actually the telltale sign of the mystery family disease.
Jocelyn watched Dr. Seidman stare intently at the ultrasound screen. Then the doctor turned to Jocelyn and with a pained expression on her face, she said Jocelyn did have a heart murmur. It was not a guarantee that Jocelyn would eventually develop the family disease, but there was now a very strong chance that she could.
Jocelyn imagined her own body filling up with all that Kyle the way her father's was, and tears began to well up in her eyes as she watched the black and white image of her heart beating on the screen. Normally, a heartbeat was a sign of life, but to Jocelyn, her heartbeat looked like a death sentence.
Almost a year later, near the end of 1995, Bill sat inside of a room at the Ohio Doctors' Hospital in Columbus. His condition had only gotten worse, and because doctors in Boston had not been able to help him, he and his wife Rhoda decided to go back home to Columbus. However, even though they were now closer to their house, Bill rarely spent a night in his own bed. He was almost always in one hospital or another.
That day, Bill was hooked up to an IV that pumped vitamins and minerals into his bloodstream. His mystery illness had been stealing proteins and fats from his digestive system for almost three years, and so he now had to have this injection of nutrients twice a day in order to get the nutrients he needed. Bill looked down at his scab-covered arms from all the needles, his swollen ankles, and his huge, rounded stomach. He was in the worst shape of his life, physically and mentally.
Bill knew that Dr. Seidman was trying to identify his illness and find a cure, and he had held out hope that she would. But now, he was just worried about the rest of his family. Dr. Seidman had told Bill that a total of 13 people in his family were likely to develop this disease, including both of his daughters. Now, Bill didn't only have to deal with his own horrible and confusing illness, he also had to deal with the knowledge that he might have passed it on to both of his kids.
Suddenly, a knock on the door interrupted his thoughts, and a tall man with gray hair and a clean-shaven face entered. He introduced himself as Dr. Larry Lynn. Dr. Lynn sat down beside Bill's bed. He explained that he was a pulmonologist or a lung expert, but more than that, he was obsessed with medical mysteries. He told Bill that he spent his free time digging through the hospital's records for inexplicable cases, and he'd happened upon Bill's file.
Bill was skeptical. He asked Dr. Lin how many medical mysteries he'd been able to actually solve so far, and with a smirk, Dr. Lin replied, every single one. For the first time in months, Bill smiled.
About three months later, in the spring of 1996, Bill, along with his wife Rhoda and his daughters Jocelyn and Hillary, were all clustered together on the couch in Bill's room at the Ohio Doctors' Hospital. Bill looked out his window at the Columbus skyline, and he inhaled deeply. He was breathing better than he had in years, and the scabs on his arms were finally beginning to heal. He felt healthy enough to get out of bed and sit with his family and carry on an actual conversation.
Bill knew these improvements were all thanks to Dr. Lin. When he began treating Bill, one of the first things Dr. Lin suggested was a new diet. The chyle leaking into his abdomen contained fats and proteins, so Dr. Lin told him he would need to eat a fat-free, low-protein diet. Dr. Lin's hope was this would make his body produce less chyle.
It had only taken a few weeks on this new diet for Bill to start to feel a difference. His gut was still hard and rounded, but he could now breathe better. And he also did not have to have the fluids drained from his chest as often. Bill breathed out and told his wife and children that soon enough he'd be healthy enough to go for a walk downtown. And as he dreamed about leaving the hospital for good, there was a knock at the door. Dr. Lin came inside and told the family he had a big announcement. He had solved Bill's medical mystery.
Bill and his family all sat up, anxious to hear what the doctor had to say. Dr. Lin said he'd been investigating Bill's illness using a brand new tool called the internet. He'd spent hours searching for people with symptoms similar to Bill's, and eventually he found a family in Turkey with a condition that seemed identical. They'd been diagnosed with a rare disorder called Bechet's disease.
Bichette's disease causes blood vessels throughout the body to swell. This leads to bodily fluids like blood and lymph not being able to circulate properly. And one potential symptom is lymphedema, just like Bill and his relatives had experienced. Bill couldn't believe it. He asked the doctor what this diagnosis meant. Was his disease treatable? Would he and his daughters be okay?
Dr. Lin nodded. He said that while Bichette's disease was rare and poorly understood, the treatment couldn't be simpler. All Bill needed were steroid injections, and he'd be good as new. Bill jumped out of his hospital bed, an IV still attached to one arm. He threw his arms around his daughters, he kissed his wife over and over, and he let tears of joy roll down his cheeks. Finally, he was going to be okay again.
The following night, Bill was lying in his hospital bed, looking at the dark sky through his window. Dr. Lin had given him a steroid injection, and he felt hopeful that the treatment would work. But suddenly, Bill felt a sharp pain in his chest, and the whole room went black. Two days later, Bill woke up. The light in his hospital room seemed blindingly bright. As his vision focused, he saw Dr. Lin standing at the foot of his bed. The doctor's eyebrows were knitted together, and his lips were pressed into a frown.
The doctor told Bill he'd gone into cardiac arrest. The hospital had been able to resuscitate him, but the emergency made one thing clear: Dr. Lin had been wrong. Bill did not have Bichette's disease, and steroids were not going to cure him. If anything, they could have made his condition worse.
Bill was stunned. He'd almost died and now he was also back to square one with a mystery disease that no one knew how to treat that also might kill him. In that moment, he suddenly felt an overwhelming sense of absolute hopelessness.
Six months later, in September of 1996, Bill's daughter Jocelyn was writing on a yellow pad working on a term paper. After spending her early college years partying and skipping class, she was now committed to getting her life together and finishing her degree. Plus, focusing on school helped her ignore the things that made her the most anxious, the knowledge that she might one day develop the same disease that was killing her father.
As she scrawled on her paper, Jocelyn's phone rang. She picked it up and she heard her mother's strained voice on the other end. She said Jocelyn's father had been placed into a medically induced coma. Jocelyn's mother explained that doctors were no longer able to drain that chyle from her father's chest and abdomen. He just had way too much scar tissue built up from years of undergoing the tapping procedure.
And so now the fluid buildup was putting immense pressure on his internal organs and they were failing one by one. Jocelyn felt tears building in the corner of her eyes. She asked her mom if this meant her father was going to die. After a moment, her mother said yes. Jocelyn swallowed hard. Her father had never lost hope that his doctors would be able to identify his condition and find a cure, but they didn't.
Jocelyn wanted to start sobbing, but she did know there was one hidden blessing. Her father's suffering would finally be over. And sure enough, just a few days later, on September 25th, Bill would die. Seven years later, in 2003, 28-year-old Jocelyn was walking towards the Golden Gate Bridge in San Francisco, California.
After her father passed away in September of 1996, Jocelyn had moved far away to California. But the trauma of her father's slow, painful decline followed her wherever she went. She was acutely aware that she might meet the same fate.
It was also very hard for Jocelyn to forget that she had not been there during her father's last moments. She'd flown to Columbus and gone to the hospital, but when her dad actually drew his last breath, Jocelyn had been outside smoking a cigarette. Jocelyn had a lot of regrets and painful memories. The only thing that brought her any real solace were these long walks when she could breathe in the summer air and organize her thoughts.
Jocelyn found a nice spot to sit on the bridge where she could look through the red bars to the sparkling water down below. She crossed her legs and as she did, she noticed that one of her ankles looked much larger than the other. It had swollen to nearly twice its normal size. Jocelyn remembered how her father's legs and ankles began to swell just a few years before he got really sick, but she tried not to panic.
She told herself that her ankle was just aggravated from the long walk and so she went back home that day and sure enough the swelling went down. But a few days later, she was at her apartment getting ready to go on another walk and her foot and ankle were so swollen that she couldn't even get her shoe on.
Jocelyn knew she could not ignore the swelling any longer. So she went to her small desk, turned on her computer, and opened up her email. She typed in Dr. Christine Seidman's address and wrote her a message asking if she should be worried about the swelling in her legs.
Jocelyn finally got a response the next day. Dr. Seidman didn't say whether or not she should be worried. Instead, she offered to fly Jocelyn out to her lab near Boston. She said that in the seven years since Jocelyn's father had passed away, she had not stopped researching her family's mystery illness, and she'd recently made a breakthrough that she wanted to tell Jocelyn about in person. The idea of going back to Boston made Jocelyn feel really nervous. She hadn't been there since her dad died,
But this was very important, and so she responded to Dr. Seidman with a yes and immediately began packing her bags. A few days later, Jocelyn walked into the tall red brick building that housed the Seidman Laboratory. She went inside and introduced herself to one of Dr. Seidman's research assistants, a young dark-haired woman.
As soon as Jocelyn said her name, the research assistant beamed. She told Jocelyn that she was so excited to see her. Jocelyn was really taken aback. She didn't even realize that the researchers would know who she was.
Just then, Dr. Seidman rounded a corner and said hello, looking happier than Jocelyn had ever seen her before. Jocelyn followed her into the back of the lab, trailed by the cheerful assistant, and they all sat down in the cluttered room while Jocelyn looked back and forth at the two women, a little uneasy at how excited they both seemed.
Before she could even ask what was going on, Dr. Seidman told her. She and her team had used a technology that had only just been developed, and at last, they had found the cause of her family's mysterious disease.
Dr. Seidman had been painstakingly creating a map of Bill Linder's genes so that she could find anything that looked out of the ordinary. But there are hundreds of thousands of genes in every individual person and Dr. Seidman had to build her map one by one. That's why her research had taken so long.
But finally, they'd found an extremely rare mutation of a single gene that had caused Bill's illness. It was a lot like finding a needle in a haystack. The chances of a single defective gene leading to such a debilitating illness were about one in a billion. Even more surprisingly, Dr. Seidman concluded that no one in the world outside of the Linder family carried this mutation.
Dr. Seidman discovered that the genetic mutation began with Jocelyn's great-great-grandmother, Esther, who first showed symptoms of the disease roughly 100 years earlier. That made Esther what disease trackers call "Patient Zero," the first patient with a brand new disease. Since Esther, this mysterious condition had been passed down five generations.
Once Dr. Seidman found this genetic defect, suddenly Bill's illness made more sense. The mutation stopped his liver from being able to properly filter toxins out of his blood, and from there, it caused a cascade of serious problems, including the chronic swelling and the chyle buildup in his chest and abdomen. Lastly, the genetic mutation also appeared to cause the family's telltale heart murmur.
Jocelyn was on the edge of her seat as she heard all this. She asked Dr. Seidman if now they'd be able to cure her, her sister, and her other relatives who had likely inherited this disease. But Dr. Seidman shook her head sadly. She said while this was a huge discovery, many questions still remained. I mean, at this point, they didn't even have a name for this disease, and so they really had no way to treat or cure it, at least not yet. Jocelyn felt totally deflated.
Even though they had just figured out what was behind the family's deadly illness, there was nothing she could do about it. Over the last 20 years, Jocelyn has come to terms with her diagnosis. Because the risk of passing on her deadly genetic variant was so high, Jocelyn and her husband chose not to have kids. Her older sister, Hillary, opted to use a form of in vitro fertilization that allowed her to have twins who were both free from the family disease.
Right now, in the sixth and newest generation of the Linder family, there are 23 children. But due to advances in fertility treatment, none of these new generation kids have the genetic mutation. The Linders were able to stop the spread of their family illness. Today, there are seven members of the Linder family who do carry the genetic mutation who are still alive. Dr. Seidman and her team continue to research their illness in hopes of someday finding a cure.
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 Karis Allen Pash Cooper. Our editor is Heather Dundas. Sound design is by Andre Pluss. Our coordinating producer is Taylor Sniffen, and our managing producer is Sophia Martins. Our
Our senior producer is Alex Benidon. Our associate producers and researchers are Sarah Vytak and Teja Palakonda. Fact-checking was done by Sheila Patterson.
For Ballin Studios, our head of production is Zach Levitt. 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. Wondery.
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