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Esther Schweins & Martin Mücke: On the trail of rare diseases

Do you have buzzing in your head, pain in your hand, cramps after eating, although there are no allergies or intolerances? And are you slowly going insane? Then you hear Dr. Martin Mücke and Esther Schweins, they may have a solution for you in the doctor’s coat sleeve. In their new podcast “”, the doctor and the actress talk about how patients with rare diseases can often be helped. And where to go. Illnesses that you hardly know about, that are not recognized – I imagine that you feel very lonely with your suffering, which sometimes is perhaps not even taken seriously.

Esther Schweins: That’s right. PODs – patients without a diagnosis – are in free fall. Because without a diagnosis one falls out of the ordinary in our health system: out of the social framework of support. Not to mention that of society or the family. Then a diagnosis means everything. Because with a diagnosis you come back to a system. And above all, a healing process can finally start.

What if there is no cure?

Then a diagnosis, no matter how difficult, is still better for most people than not knowing what is going on. My podcast partner Martin Mücke says that a diagnosis brings relief because a prognosis can be made and people can deal with a prognosis. People are strong. Sometimes they even develop self-healing powers that cannot exist without a diagnosis.

Why are diseases nowadays, with all the means at our disposal, often not at all or only with difficulty?

Because there is no time for it in normal operations. Fortunately, there are centers for rare diseases that can deal with these cases in a completely different way. They are only there for this, they have the time and the possibilities.

Your podcast with Dr. Martin Mücke – how did it come about?

We were virtually matched by a producer and writer friend who knew about my interest in medicine. And also my penchant for topics like “rare diseases”. Plus, I’d be lying if I said that the narrative element didn’t appeal to me too.

We now know better than ever – see Corona – that people are needed who can convey complicated issues as generally as possible. Denzel Washington asked in “Philadelphia”: “Explain it to me as if I were five years old.”

(laughs) Exactly, talking shop often doesn’t get us anywhere if we want to explain something in an understandable way. I’ve learned that you can’t ask really stupid questions because there is always an answer that will take you a step further.

And what made you so enthusiastic about medicine? Did you always want to be a doctor and then television got in the way?

In fact, my interest in herbal medicine was piqued early on. We could be better precautionaryists if we could fall back on the large pool of naturopathic knowledge. Herbal medicine and medicine complement each other well in my opinion. I think there is a treasure slumbering there that needs to be raised again.

You and Dr. Mosquitoes also want to dispel health myths in their podcast – which myths are we most likely to experience?

We tried to find the lowest common denominator for the first few episodes. And so we thought, for example: “If you have a nosebleed head back your neck!” (laughs) Please don’t do that! But the cold washcloth, that’s good, and then just squeeze your nose below the nasal bone so that the vessels can close.

I even do it intuitively. Don’t you intuitively do something right more often than you think?

Intuition is always an issue for many of the rare diseases, because often all you need is a doctor who follows his intuition. Intuitive inspiration has put one or the other expert on the right track, which should not be underestimated.

Intuition is one thing, empathy the other, both of which are not unimportant in the medical profession. But often there is simply no time.

Unfortunately this is actually the case. And these so-called “gods in white” are, after all, only human. People who know that they have a healing mission and have started medical school for this reason. A doctor like Dr. After all, Mücke, who works at a rare disease center, has the luxury of actually being able to do his job. He can conduct an anamnesis interview that deserves the name. When he has found a solution, he can participate in the healing of the patient. The patient is not just a case study. This of course leads to a certain satisfaction that everyone would like to feel in their job. This is an energy factor that should not be underestimated.

It must be frustrating to be trapped in the healthcare system …

A doctor recently told me that his greatest gift was being able to work with children, because they want to be actively healthy. Adults always forget that doctors are not magicians and that a patient has to do a lot himself for his or her healing.

Few patients, rare diseases, that usually also means: little research because little profit, right?

Always! Profit is the factor that precedes it all like a monstrance. This is the moment when you really have to build a bridge for medical professionals as well as for scientists: How much they take on when it comes to shedding light on the darkness, how they get research funding – then pull I take my hat off.

When Dr. Mücke, after an odyssey that many patients have undergone, is now on the market with a podcast – won’t it be totally overrun? And also run out of time?

There is not only the University Clinic for Rare Diseases of the City of Bonn, but also others all over the country, and the aim should of course be that there are many more of these contact points. It would be desirable if a resident doctor would then refer a typical “revolving door patient” to a center.

Last question: why should we watch the podcast from you and Dr. Listen to mosquito?

(laughs) Because these stories are like thrillers, or rather like detective stories: in search of an insidious germ. On the trail of the virus’. Find the enemy in your body! Because one day it might affect you yourself. Because they are stories of people who often thought they had lost everything and then regained their lives.

Sabine Oelmann spoke to Esther Schweins

Start of the podcast “Incredibly ill – patients without diagnosis” on September 10th on all popular podcast platforms.

Sonia Gupta
Soniya Gupta, who joined the Technical University in October 2015, continues his education life at Technical University. As the passion for aviation increases day by day, it has a great interest in technology and gaming.


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