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Chronic diarrhea, dizziness, and a racing heart — but no diagnosis? DW explores rare diseases, medical gaslighting, and the patients who finally got answers.
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00:07Imagine feeling seriously ill, but doctors and even loved ones think it's all in your
00:12head. Is this medical gaslighting?
00:16Many people told me I should go to a psychiatric ward. Apparently I was schizophrenic but didn't
00:22know it.
00:23We meet sufferers who've struggled with the health system.
00:42It all started on the day of her grandmother's funeral.
00:47After the service, Tabea Albert suddenly develops stomach pain and severe diarrhea.
00:58We all believed that she was simply overwhelmed because of what we'd all just been through
01:03with grandma's funeral. But things didn't improve afterwards. Over the next days, the vomiting
01:12and diarrhea become even worse. My condition deteriorated very quickly. I was pretty much
01:21in bed the whole time trying to recover. Tabea Albert now has to go to the toilet 20 times
01:30a day. The diarrhea leaves her completely exhausted. After two weeks, her mother decides enough
01:36is enough and calls an emergency doctor. She remains in hospital for three weeks. She's
01:44given IV fluids and the doctor's search for the cause of the diarrhea. With no luck. Eventually,
01:51she's sent home with a vague diagnosis. They said it was a long-lasting gastro-infection
01:59and I should recover at home. Instead of resting, Tabea Albert resumes her midwifery training
02:07because she's already missed so much. But the diarrhea doesn't stop and now her circulation
02:13also starts playing up. By now, she's lost eight kilograms. She turns to her family doctor,
02:25hoping for an answer. He discovers small areas of inflammation in her bowel.
02:34Naturally, we considered all sorts of possible differential diagnoses. I thought it might
02:41be Crohn's disease or ulcerative colitis. Both of these diseases cause chronic inflammation
02:50in the bowel. So that would fit. Her constant diarrhea would also be typical. So Dr. Kai Strassmann
02:57attempts a treatment. He prescribes cortisone based on a suspected diagnosis, because it
03:03usually produces good results for chronic inflammatory bowel diseases.
03:13I noticed that the pain had eased and that the diarrhea became less severe. The medication
03:18lasted for about a month and during that month I felt reasonably well. But then unfortunately,
03:24my doctor went on holiday. Tabea Albert urgently needs a new prescription for cortisone. But
03:33no doctor is willing to give it to her. A relapse is only a matter of time.
03:42You'll find out how Tabea's search for answers only became more complicated. The WHO estimates
03:49that 30,000 diseases have been identified, of which 8,000 are considered rare, depending
03:54on the definition. Diagnosing these conditions is often difficult and takes an average of five
04:00years. That's because most doctors rarely encounter them. Many are caused by unusual genetic mutations
04:07and still have no cure. That's also why many rare diseases begin in early childhood. Cystic
04:14fibrosis is one of them. Thick, sticky mucus damages the organs. And until recently, life expectancy
04:21was typically low. But that's beginning to change.
04:29Push-ups. Just a few years ago, Maximilian Bronnard couldn't do a single one.
04:37Push-ups used to be out of the question for me. These days I can do about 10 to 15
04:42in three sets.
04:43No way was that possible before. I'm Maximilian Bronnard, I'm 21 years old, and I have cystic
04:50fibrosis. Maximilian can barely believe it. Not long ago, he couldn't imagine stepping foot
04:58in a gym. Now he's here five times a week, even on the treadmill. He says he's never felt
05:04this fit in his whole life. Maximilian has had cystic fibrosis since birth. It's a rare inherited
05:12disease that shaped his entire life. In Germany, it affects around 8,000 people. You wouldn't
05:21know it from looking at Maximilian, but his disease is life-threatening. Mostly due to
05:28a thick, sticky mucus that clogs vital organs, especially the lungs and digestive system.
05:35Many diagnosed die in childhood. Now 21 years old, Maximilian remembers when the doctor
05:42gave him a grave prognosis. Back then they told me I might live to around 17 or 18 if
05:50things stayed as they were, because they were so bad. That hit hard.
05:58His mother often looks through old family photos. When he was born, he seemed healthy.
06:06But it didn't take long for Sandra Bronner to realise that something was wrong. Shortly
06:12after birth, he lost a dramatic amount of weight, despite feeding well. Four weeks later came
06:19the diagnosis. We both cried, his father and I. We were a young married couple and never imagined
06:28that anything like this could happen to us. From then on, life revolved around inhalation
06:35therapy, constant infections and stays in hospital. By the age of one, Max was so underweight
06:41that he had to be fed through a tube.
06:45That's when the doctors decided you needed a feeding tube through your nose because they kept saying
06:50you were too thin. At first we tried to make sure you didn't pull it out, but eventually
06:55you got used to it. Two dummies and everything worked.
07:02Three years ago, everything changed. A new medication transformed his life that meant he got sick
07:08less often and didn't need to be hospitalised. He describes it as a total game changer.
07:15I could live life again. The new drug works wonders, but it costs several hundred euros a day.
07:23Although Maximilian has benefited enormously, the price still shocks him.
07:28It's terrible that medicines can be so expensive, especially in countries where there's no assistance
07:36to access them. That's sad.
07:41Every three months, Maximilian and his mother return to the clinic for a routine check-up.
07:46One of the most important tests is his lung function.
07:51To test how well his lungs are working, Maximilian is asked to take some regular breaths
07:57and then some really deep breaths.
08:05Sabine Weger is his doctor and is sharing the results with him.
08:12Everything is excellent. Going on these results alone, you'd say we're seeing completely normal lung function.
08:20And a life that's now close to normal, thanks to a new treatment combining three different active ingredients.
08:29There's no doubt that this medication has been a real game changer. It's made an enormous difference and we're all
08:35delighted that it's available.
08:38For Maximilian, the future finally looks bright. He hopes to begin vocational training in sports management.
08:46I can't put it into words. It completely changed my life. It's impossible to express how grateful I am to
08:55finally be able to live a normal life again.
09:04A normal life is still a long way off for Tabea. In fact, her ordeal is far from over.
09:15Without cortisone in just a few days, the severe diarrhea returns and even worse than before.
09:24Tabea Albat is reaching breaking point.
09:29I remember one night before I was meant to work. I broke down in tears in front of my parents,
09:35thinking I won't make it through a night shift because I'm utterly exhausted.
09:44Her mother Helga is deeply worried. The next morning she takes her to another hospital. This clinic has a gastroenterologist,
09:52a specialist in chronic bowel diseases.
09:59I remember it well. When I first saw her, she'd already lost 20 kilograms. She couldn't eat and was already
10:07showing signs of malnutrition.
10:11The specialist admits Tabea immediately and puts her on an IV drip so the nutrients she urgently needs get into
10:19her bloodstream.
10:19But does she really have inflammatory bowel disease?
10:27The lining of her small intestine is badly damaged. Such extensive inflammation isn't typical of Crohn's disease. Instead, it points
10:36to another condition.
10:39We found a number of inflammatory changes in the small intestine that strongly suggested an inflammatory reaction caused by a
10:50food allergy, in particular celiac disease, commonly known as gluten intolerance.
10:59But blood tests at a genetics laboratory rule out celiac disease. So what's making her so sick? The search for
11:08answers continues.
11:13The doctors now conclude that it may simply be an unusual gastrointestinal infection as their treatment appears to work.
11:23Two weeks later, she's discharged. But just one month later, the diarrhea comes back with a vengeance. Everything starts over.
11:34She loses weight at an alarming rate and eventually becomes too weak to leave the house.
11:45By then I'd lost about 25 kilograms. I normally weighed around 75 kilos. Then I was down to 50. Her
11:54mother takes her to yet another hospital. But this time things get worse. What she experiences there? Coming up later.
12:07Digestive problems can have many different causes, making them difficult to diagnose. It's much the same with dizziness and circulatory
12:15problems, especially when standing up.
12:18They're often blamed on low blood pressure. Unpleasant, but usually not considered serious.
12:24But if your vision regularly goes black, or you even feel like you're about to faint, it's important to find
12:30out why. And above all, don't give up. Keep pushing until you get answers.
12:39Moving up and down like this is exactly what Henrika Armen's body struggles with. It often makes her dizzy and
12:46sends her heart racing. She's been dealing with these debilitating symptoms for decades.
12:53I'd suddenly feel incredibly hot. My heart rate would go up, my circulation would go haywire, and everything would start
13:01going black. I always wondered, how can this be happening when I'm eating five meals a day? Why am I
13:08still having these circulation problems? I knew something wasn't right.
13:13Henrika is full of energy. The 35-year-old has three young children, works in administration and leads a busy
13:20life. But she's been living with daily episodes of dizziness, sweating and a racing heart. And no doctor has been
13:26able to explain why.
13:31People told me I should see a psychiatrist. Everyone put me in a box. Either they thought I wasn't eating
13:38enough and that was causing circulation problems, or that I was a stressed out mum with three kids who was
13:43just overwhelmed.
13:47Neurologist Julia Forstenpointer and her colleagues frequently see patients who experience a racing heartbeat, lightheadedness, or sudden sweating when standing
13:57up.
13:58We see patients like this all the time. For them, these unexplained circulation problems can be very distressing, and it's
14:06important that they're taken seriously.
14:09Cardiologist Roland Tilts also sees patients with these symptoms repeatedly ending up in the emergency room.
14:17It's important that patients receive a thorough professional evaluation, rather than going to the ER over and over again.
14:25We need to rule out potentially dangerous causes, like serious cardiac arrhythmas.
14:32Every time we stand up, the body faces the same challenge.
14:36Gravity causes blood to pull in the legs. In a healthy circulatory system, that's easily corrected.
14:43The heart beats a little faster. The blood vessels in the legs constrict. Blood is pushed upwards, including to the
14:51brain.
14:51This adjustment is controlled by the autonomic nervous system.
14:57Henrika's heart is healthy. Her blood pressure is normal, but under stress her heart rate can surge dramatically.
15:07She finally underwent a comprehensive evaluation at a specialty clinic.
15:12Neurological testing, extensive blood work, and a detailed medical history.
15:17Doctors left no stone unturned.
15:20They suspected a specific disorder of the autonomic nervous system.
15:25Postural orthostatic tachycardia syndrome, commonly known as POTS.
15:30In people with POTS, too much blood pools in the legs when they stand up, because the autonomic nervous system
15:37doesn't efficiently regulate the circulation.
15:39The heart beats faster to compensate. Even so, the brain may not receive enough blood flow.
15:46The nervous system overreacts, triggering symptoms like sweating, dizziness and nausea.
15:52The diagnosis can be confirmed using a tilt table test. The examination allows doctors to see exactly how the circulatory
16:00system responds when the body is brought upright, and whether POTS is responsible for the symptoms.
16:06A normal resting heart rate is around 70 beats per minute. After being brought upright, if the heart rate rises
16:14by at least 30 beats per minute or goes above 120, that meets the criteria for POTS.
16:22How will Henrika respond? Her heart rate starts at around 80 beats per minute, only slightly elevated.
16:30But as soon as the test begins, that changes dramatically. Her pulse shoots past 120. Her heart is racing.
16:38She begins sweating. She's on the verge of passing out.
16:42The doctor stops the test. The diagnosis is clearly POTS. At last, Henrika had an answer.
16:49She's learned she's far from alone, and more importantly, what she can do to manage the condition and avoid fainting.
16:56Marvin Van Dixon also has a problem with fainting. Now 27, he's been affected since age 3.
17:02It first happened when he saw a needle on vacation. Since then, it's kept happening, sometimes on a crowded train,
17:11sometimes triggered by nothing more than a thought.
17:13His system overreacts, setting off a reflex that disrupts his circulation whenever he thinks about something that frightens him like
17:21a needle.
17:23It starts with this tingling sensation that gradually rises through my body. Then I know I need to lie down
17:29immediately, otherwise I'll pass out.
17:34It begins as a fear response. The heart races, then too little blood reaches the brain. The autonomic nervous system
17:42effectively pulls the emergency brake, causing the person to faint.
17:47Once they're lying flat, blood flow to the brain improves and they become conscious again.
17:53Recently, Marvin lost consciousness on the highway, fortunately as a passenger. Now he wants answers.
18:00At a specialized clinic, neurologist Berthold Voges and his team deal with patients who suffer from fainting spells and they
18:08often find abnormalities in their autonomic nervous systems.
18:12It can be triggered by disgust, fear, swallowing, urination and many other stimuli. Countless things can trigger this faulty circulatory
18:26response.
18:26The more often someone faints, the more anxiety develops. The more anxiety, the more likely further episodes become. It's a
18:36vicious cycle that seriously impacts the quality of life.
18:40The doctors want to help break the cycle, so Marvin is undergoing a provocation test while his physiological responses are
18:47monitored and recorded. The staff begin by talking about needles. Immediately his heart rises. Two minutes later he faints.
18:55This time under medical supervision. The diagnosis is reflex syncope. Now he wants to learn how to control these reactions.
19:09We want to be able to explain what's happening to the patients and we want to offer treatments that can
19:14prevent it from happening.
19:17Marvin is now learning, through exposure, how to manage the fear and recognize his body's warning signs. One technique is
19:25to repeatedly tense and clasp his hands together, helping to stabilize blood pressure and prevent fainting.
19:32Now I can regulate those feelings better and tell myself it's not fear, it's a reaction.
19:38Henrika Imam now has a routine. Every day she wears compression stockings, drinks three litres of water and does exercise
19:46to support her circulation.
19:51It was incredibly liberating. Finally I knew what was going on and I knew I needed to approach things differently.
19:59Today, along with therapy, she exercises to keep her circulation stable, giving her the confidence to get on with life.
20:10Tabea hasn't been that fortunate. In fact, quite the opposite. Let's see what happened next.
20:22At a third hospital, the doctor has a radically different theory. He says the loss of Tabea's intestinal villi isn't
20:30caused by a physical illness at all.
20:34They said it was anorexia. Their theory was that the cause of the villus atrophy was that I was taking
20:43laxatives and damaging my own bowel.
20:49Is Tabea mentally ill? She's transferred to a psychiatric ward despite insisting she's not anorexic and isn't taking laxatives.
21:04I went along with it because I was desperate. Anything to get help.
21:11Now, under constant observation, she eats well but doesn't gain a single gram. How could she? She's still suffering from
21:19severe diarrhoea.
21:23She explains what a difficult time it was for her and how misunderstood she felt by the circumstances.
21:31First they thought I was taking laxatives. Then that I was secretly exercising in the shower, which was absurd as
21:37I couldn't climb a flight of stairs.
21:40But the doctor doesn't believe her. He doesn't believe that she's having diarrhoea. He's convinced she's lying and that she
21:49has anorexia.
21:51His theories become increasingly bizarre. He even said perhaps you're schizophrenic and don't know it.
22:03Maybe you're secretly taking laxatives and have a second personality doing it and you just don't know.
22:13Now schizophrenia too? It's like a nightmare. Summoning the last of her strength, Tabea flees the hospital.
22:27Back home she collapses. She can't keep fighting her mysterious illness for much longer.
22:36Tabea was afraid she wasn't going to survive. To put it bluntly, she was afraid she was going to die.
22:46Shortly afterwards, she's admitted for a second time to Dr. Henning Adamek's ward and immediately starts receiving nutrient infusions again.
22:55Her condition is now life-threatening. This is clearly not a psychosomatic illness.
23:01But what is it? Could it still be celiac disease? Perhaps the laboratory got it wrong.
23:09Then Dr. Adamek discovers a newly described disease on the internet.
23:13It looks like celiac disease, but it isn't.
23:21In this condition, the inflammation and destruction of the intestinal villi are caused by the body's own immune system.
23:28It produces antibodies against a specific protein on the surface of the villi and destroys them.
23:36Could this be the answer?
23:39The doctor finds a specialist laboratory that can detect these antibodies.
23:46He immediately sends a sample of Tabea Albert's blood for testing.
23:57Two days later, the laboratory doctor called me and said, we've got it.
24:01He told me he'd never seen antibody levels that high before.
24:07This is it. The moment she's so desperately been waiting for.
24:13When Dr. Henning Adamek says he finally knows what's wrong with her, she can hardly believe it.
24:21I remember bursting into tears with relief because at last my illness finally had a name.
24:31The cause of everything is neither celiac disease nor Crohn's disease nor laxative abuse.
24:38It's autoimmune enteropathy, a disease in which the immune system attacks the body's own intestine.
24:46This disrupts the bowel's fluid and stool regulation causing severe diarrhoea.
24:51Additionally, patients are no longer able to absorb nutrients properly, leading to malnutrition.
25:00Fortunately, there's an effective treatment for this newly identified disease.
25:04It's an old medication, the very one that it helped to be a month's earlier.
25:14It was an incredible feeling.
25:16I was given cortisone straight away and within 24 hours I could feel the pain and the diarrhoea improving.
25:23I started eating again.
25:25Oh, I ate so much afterwards, it was incredible.
25:30Four years later, Tabea Albert has returned to her normal weight
25:34and has even tapered off the cortisone.
25:37She's completed her midwifery training and is now studying medicine.
25:42She's determined to treat her future patients the way she herself had wished to be treated.
25:52And we hope you're determined to join us again for the next edition of In Good Shape.
25:58Until then, take care and goodbye.
26:07I'm sorry.
26:08I'm sorry.
26:09I'm sorry.
26:09I'm sorry.
26:09I'm sorry.
26:09I'm sorry.
26:10I'm sorry.
26:10You
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