closed minded story. with exclusive. the must see concerning. to be curious minds. do it yourself networkers. subscribers don't miss it. hello and welcome to and good shape coming up. the importance of hygiene bacteria are lurking everywhere. doric nest there are let there be no lights. and a.o.l.'s facing a rear neurodegenerative disease head on. and here's your host dr carsten.

some doctors i really ought to think especially those who are on t.v. do you know the show dr house this guy solves medical mysteries there are 50000 different diagnosis and medicine 8000 of them read diseases so rare that a regular g.p. has never had off them but. the stock to hide quoted here at the show in berlin welcome to. imagine you have a disease that no one knows when it could be said it's a rare disease and you would be surprised where diseases are not so seldom.

do you remember the ice bucket challenge in the crazy year of 2014 where stars doctors and joe's most had ice bucket with ice cold water dumped over their heads to raise awareness for a less traffic letter roads to rosa's a very rare disease and many people were saying this instance silly perplexities stunt but do you really think it was that silly. that. in 24 gene bruno schmidt came across the ice bucket challenge a fund raising campaign for research into a.o.l.'s. he'd never heard of the disease and decided to find out about it then came a shock. and told me get psyched on it is all there in black and white about us markets opened by muscle twitching cramps. and the fine motor skills of the 1st to go. the inability to open doors and bottles i was exactly what i was experiencing

now that was like scales falling from my eyes. as marjorie's all shut down and all the muscle twitching had grown more frequent. kept telling him to see a doctor. and then things were impossible to ignore he had many tests after 4 months a diagnosis a year less is a progressive neurological disorder the mind remains fit but nerves and muscles gradually degenerate until breathing becomes impossible. well i feel completely abandoned at the diagnosis and they say there's no treatment for 2 weeks it was terrible but then i said there's no point moaning i'm changing the rules this disease is going to have to work hard to destroy me. he began to tackle the disease head on with daily balance board training bio resonance therapy

hypnosis and dietary changes. and. refused to let the doctors convince me that the disease will follow a set path that it will kill me. and they told us that 5 or 6 times in the space of an hour and i said i'm not so sure about that. but there's no denying that the symptoms are progressing things like brushing his teeth or showering are becoming increasingly difficult on waking he feels stiff and weak the former athlete is witnessing his body gradually giving way to the disease . cycling is one of his great passions but this too is becoming increasingly challenging. a special hydraulic system and electric gears make things easier. to sit on my bike and cycle off i forget about my disease i just focus on riding my bike it's great fun i love it.

even though his gradually declining strength is making life harder bruno tries to live a normal life. but do have to be careful not to waste too much time on pointless activities. his diagnosis has helped clarify what's really important to him. enjoying life more every 2nd of it and i try and see everything in a positive light. this is the biggest challenge of his life but he hasn't given up hope of mine i want to outlive my parents i promised them that i wouldn't go before them and i want to meet my grandchildren that's really important. is determined to live as long and as well as possible. as is not just in tact of course it's hard to

deal with it every day but as long as my father is coping that's what counts. the family knows that life will change and become more difficult each time bruno symptoms worse and they have to readjust it's a challenge for the whole family. and he was a. head of the department for rare diseases at the bridge hi thanks for having me today we just saw a report of a patient who was made aware of his condition that's his name a less after he saw the ice bucket challenge which was quite a spectacular procedure is it very important that we have more such fun crazing campaigns yes obviously and it was a very good example that for the red disease topic just public recognition is absolutely helpful so indeed we need more of it but it's a different mission this is in principle it's it's the border where the expertize.

in the system is not enough to all patients with this rare disease will find help in the system maybe some of the normal experts will know the disease but we have as are diseases in the range of 20 patients known worldwide to those so-called orphan diseases so often disease is a disease when we don't know if the name for the disease but the red disease is a disease where you have a name and all those rare diseases have something common next to it they're quite rare yeah indeed so calm. and problems into coming topics are for us the diagnosis is always very late in this patients because no one knows the disease no one thinks about the disease and. years in the system the way to find diagnosis the 2nd problem is not enough experts so if you want different great diseases you don't have the experts for all of a solvent but every patient with the disease at least in the high developed health

care systems has a right to have an expert and and at least to find some way to that's a cert common problem is that when there might be a chance to develop a new. treatment and new a new drug that it's very difficult to convince the. industry to invest in this is just going alarming and it is not it's ok but it has been already addressed that all of these 3 problems a common and that we need to centers what do you do better than i do i know better but we have so we after. the problem over a long time we have 2 main tools to say we have time and the 2nd. thing what we are doing what you can do. that we organize

interdisciplinary case conferences where all the experts come together to really think about the patient in a holistic way that each one thinks only about the liver or the brain so it's a come together you see a lot of patients with rare diseases some patients there stick in your mind one patient for music most intense patient was a. girl which has been referred to age of 6 months with severe obesity but just absolutely common uncommon in this sick in this age and. in addition to this extreme obesity. and endocrine hormone deficiency and it's a time even this sometimes to get a have not been described in terms of often disease and and time we talked a lot about that was an interdisciplinary team and we really found the diagnosis and it was a defect which. by by we could explain the whole the whole disease and

the disease has a name and a lucky part of this story you said that after a long time we are now also a successful due to developing new treatment for this go based on this recognition of the disease and now she used normal weight because you could you substitute what is missing and if we doctors can find diagnosis we sometimes think that the patient is making it up and then such a center for a disease is might be the best solution. it's a situation that diana zeba is all too familiar with she's been plagued by severe pain in her leg since childhood back then no one took her seriously. my stuff just some tore my family plaque in my heart i was usually told the symptoms were the kind of growing pains are suffered by young children and then there were the gastro intestinal issues they used to give me some sort of medication to help it

with that but it but the leg pains when taken seriously at all what. people said i was imagining things last time. and that went on for years. 2 years ago she sought help at a center for red diseases in our. neurologist mike you don't examined her and pinpoint the cause of her problems after just 2 consultations yeah and that's what he's trying it was a weight off my shoulders. my heart and i finally knew what was wrong with me i said sounds just sharp image i always had the feeling that i had something rare but it was never investigated or confirmed. it vice because the doctors didn't believe me they thought i was faking it making it up the lantern and it was and. diana suffers from a rare genetic disorder fabry disease. the highest hardest thing called on it

starts with neuropathic pain burning tingling or stabbing sensations in your hands and feet then there's heat and cold intolerance skin sensitivity in general a reduced ability to perspire caused by damage to nerves in the skin it can lead to heart arrhythmia and other heart issues it's all due to a specific enzyme deficiency which causes certain substances in the body to build up to harmful levels gifty sent. diana was prescribed medication which she's been taking for 5 months she still has some pain but she's been improving from month to month for have any good. i would never have thought that my gastro intestinal or heart problems would improve all my rash for women that's always the worst having a rash is a big deal and that's gone like she's also stopped taking many other medications like antibiotics but most importantly she now knows for sure what's wrong then must

not because that's but if you have the feeling that something isn't right then you should continue to fight for a proper diagnosis and not accept a mistake let's. just feel. the diagnosis has made all the difference finally diana saber feels optimistic about the future again. and here's the scary statistic from germany about the rare diseases it takes an average patient with or a disease 6.5 years from the outbreak of symptoms until he sees a specialist and in the meantime he tried 10 doctors 2 or 3 wrong diagnosis were made and he has put himself through 2 or 3 wrongful surgical interventions so this is quite an odyssey how does this affect the patients so they don't know what is easiest to have no idea what they can expect there's no idea if if they ever find someone who can treat it so this uncertainty is. we have

a problem at the 2nd point which is also. really really tough for the patients if you alone into the system so that it's no one can really discuss a disease and if you are ill you expect experts in the health care system and if you only find someone to say i don't know 3 fried no no this is really frightening yes indeed so sometimes the patients hear from their doctors that all the problems are just psychological so how can you distinguish between psychosomatic problems and really some headache problems if you really have to for a long time this uncertainty about your diagnosis this brings you. completely different psychological level and at the end you cannot really discriminate is it a problem or a psychological disease or is it just not just the reaction to the cinematic

disease and you need. an interdisciplinary team to take a lead and and we are working together. with clinics from the psychosomatic department so that we. offer the patient we that we would think about all aspects in this context many causes of disease is a genetic they can occur in adults or kids and yeah this is this is possible so we have these 8000 mentioned diseases approximately 7080 percent are genetic and most of them money fast in childhood but also money 1st later in life so that you have interacted on the various subtle symptoms but later on when you get really good diagnostic tools we also need for

a dollop of patience is. so the genetic sequencing so that the new genetic test makes you say that even if you cannot treat it genetic disease it is still porton to give the patient the diagnosis recant estimates of purposes of the patient so when it's a known disease it might might be of that that we can expect after $45.00 for as a years of the disease course that possibly in diabetes for money fast so we would not bait until the symptoms of the diabetes so then you can screen for this money frustration and this will help the patient not to run into the severe symptoms and then one important point is that as soon as we have to diagnosis we don't have to do much more further investigations and finally we have several diseases where we can really treat and we can develop treatment based on the more likely a defect we can find drugs or genetic diagnosis thanks so much for having me here

today thank you so much and one of the most interesting things for me here was that this is an interdisciplinary team which takes care of the patients and we do have an international team which takes care for all the questions our viewers of the w. like david. and augustine reason you feel being put for today's show thanks so much and keep sending in questions in. an upcoming show we'll be looking at time management many people suffer from time pressure in their lives sometimes you have too much time on your hands and then suddenly too little how can you keep it from slipping through your fingers like sand said your questions in good shape that v.w. dot com the key word is time management we look forward to hearing from you. and not so rare disease reese is also known as bashful bladder ridge is the fear of

public rest. in most of the cases people who fear the germs and bad to be rest assured restrooms i'm not that dangerous and germs are everywhere. let's take a look at hands they come into contact with bacteria and spread them around but where do bacteria hang out to not every day surroundings. in which species. but how many germs actually stick to our home. we checked it out. this is louisa our test subject we'll follow her around for a morning. what kinds of bacteria are to be found on louisa's hones to begin with the petri dish is used to collect the song paul's. professor ryan motors from the institute for medical microbiology and hygiene at philips university of marburg

will be analyzing the samples for us. so what did he find right after louisa got up . we found lots of germs that are typically found on the hand like strains of micro cockers and stuff. we would expect a clean washed hand to yield about 50 colonies on a dish like this and it's kind of one up but louisa had $300.00 so quite a few times more than a few thousands but smarter maybe she didn't wash their hands properly or the towel she used to dry them wasn't clean up talk with. what other bacteria will join those germs to find out louisa won't wash their hands for a while. the 1st candidates are lurking in the kitchen in sponges for instance. how long is this one going in he said. that more or 5 weeks it's certainly never been washed. the direct contact test shows that the sponge contains gut and skin

floor. but also fecal bacteria most of them come from food in serious cases they can cause lung infections or even sepsis. now they're probably sticking to louise's fingers and that's not good because places with lots of people are often ideal for bacterial exchange. here louis said picks up a few more bacteria. experts actually consider the metal bars in the stop button fairly harmless but of harvey we see large numbers of germs on the seat of your skin flora but also germs that shouldn't be there like us anita back to god in other words someone sat here with a bacterium that could be a pathogen the cushions measured in large numbers of it could cause an infection for 2 oscars and betsy was making perceive. many people expect to file large numbers of but yet here but in fact the germ load on an escalator rail is quite low

. something parts though are a different story there often lots of classic human bacteria on the grid mostly harmless skin germs but also pathogens the cause diarrhea is just a clue luckily there were no pathogens on it off with them but you do commonly find them on shopping carts if they pose a hygiene problem because they're rarely if ever cleaned him. as workplace is also a hotbed of bunty area the sample from the door handles show 400 colonies. what's worse the telephone and computer keyboard both have too many gut and fecal bacteria on the germs can spread on down puns. and is this even worse no not if the toilet is cleaned regularly. it's a little toilets going to inspire fear but in this case there was nothing dramatic we found a large number of bacteria but no pathogens to worry about it's kind of. we said

has come into contact with many different bacteria this morning how many of it here to her. in the course of the day louisa's being contaminated with some bacteria that aren't necessarily pleasant alongside gut flora and enter a caucus there was a staff a caucus laureus which is a post forming germ than an arson eater back on a germ the causes lung infections in hospitals in immune compromised patients especially when it's antibiotic resistant and come. up love you either can wash their hands it's a good idea to wash the 20 seconds after going to the toilet before eating to try your hands thoroughly to keep the bacteria from multiplying. i personally can understand why some fruit to be the dog because you can use darkness as. darkness you know hey. this is what

rebecca to man will see for the next 42 hours absolutely nothing. darkness therapy involves spending time in a room without any light. yamato soullessness i know i felt this really strong drawl just pull a feeling that i would like to spend several days in the dark and i wasn't afraid or skeptical after all we all come from the womb to elsmore to live. her dark retreat is being supervised by natural health practitioner saskia your rebecca moves in with her an hour before it starts. in this room will be her she domain in case of an emergency saskia will always be close by. if you feel really moved by something or fear bubbles up and you notice that you

need help then just call out i'll be there. the light switches are taped down just to make sure and the blinds are closed time to get serious some believe that living for days in complete darkness is dangerous. also hides depriving someone of external stimuli like lights for example which is so very important for our sense of well being is something that can be very harmful for people who aren't particularly stable psychologically or even physically. come. i've never heard or read anything that suggests this could trigger psychosis or anything negative. and there are lots of books about it people fear could happen but experience shows differently i don't know of a single case where this has actually happened. has undergone 3 sessions of darkness therapy herself. the last one was 26 days long that was when she decided

to share this experience with others but support is important she talks to her clients for an hour each day. 42 hours later and rebecca is emerging from the darkness listless woman i know how does she feel she moved carefully as she did when it was dark. and. i feel really really grounded and definitely very rested relaxed soft but also very in sync with myself. alfheim there by mia. rebecca plans to come again to continue her therapy in the dark. as a t.v. doctor i do love the spotlight and it will go on again next week and until then let's all try to stay in good shape.

and.

i have agreed. a dream to change the world which makes no sense to the. dream gets no browsing the crowds on stage crimped up by the creative church politer in foundation on the martin luther king the choir musical. coming on. 13 years old and surfing at

the world's top 10. out of. bed so you have to find a cause they are we're turning the frankenstein down not enter brother comedian i have to cut serve the world cup on the german island city during competitors 3 of the most there's no doubt this is going to the feel it's the full europa. league on t.w. . i'm not going to the gym i just sometimes i am but i stand up and whip it up and the german thinks deep into the german culture of looking at stereotypes a question in here think the future of the country behind our long time. needed to

be picked for this drama. to me it's cold out there nothing i might show joins me to meet the gentleman from d.w. . post quadriga international talk show is be neutral to us week in german politics in europe resolve bitter divisions over migration the government it is said stood into the abyss could friendly fire for president trump to defeat one of the strongest military alliances in the streets one of my grandsons to save on quadriga. margarita on d w. and did. you notice that you were 5 minutes or minutes. or so as an hour i mean you would be. having all.

the seats in the pantheon of the great tennis certainly he's one for the ages. but the. skull turner. starts july 10th on t.w. . iran says it intends to breach the rainy i'm in which meant to cap set by a landmark 2050 nuclear deal tehran had given a deadline of sunday for the remaining signatories to help its work around u.s. sanctions european powers the struggling to save the accord a year after u.s. president donald trump unilaterally abandoned it. more than 40 migrants have disinvite to rescue boats which docked in the italian port of lampedusa defying a government.