actually storing discussion. news is easy our website d.w. the pumps much for joining us on facebook. for. i know nothing at the germans well i guess sometimes i am placed on nothing with you the german thinks deep into the german culture. you didn't see him take his grandma down to you it's all out. next time rachel join me to meet again on the gulf coast. hello welcome to and good shape coming up. the importance of hygiene bacteria are lurking everywhere. directness there are let there be no light.

and facing a rear neurodegenerative disease head on. and you sure host dr constantly. 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 rare diseases so rare that a regular g.p. has never had off them but who sort of thing is to hide quoted here at the sheraton 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 to read 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 of over their heads to raise awareness for a less the amyotrophic lateral sclerosis a very rare disease and many people were saying this is silly perplexities stunt but do you really think it was that silly. that. in 2014 bruno schmidt came across the ice bucket challenge a fund raising campaign for research into a less. he'd never heard of the disease and decided to find out about it then came a shock that it is i'm told my website on it is all there in black and white about

us markets opened by muscle twitching. 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. from it 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. i feel completely abandoned i get 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 i 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 i 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 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. he's determined to live as long and as well as possible.

as it's not intact 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. head of the department for rare diseases at the brilliant hi thanks for having me today we just saw a report of a patient who was made aware of his condition that it'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 from grazing campaigns yes obviously and it was a very good example that for the regs in this topic just public recognition is

absolutely helpful so indeed we need more that what is the definition of real disease in principle it's it's the border whereas 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 and those are called orphan diseases so often disease is a disease when we don't even know if the name for the disease but the red disease is a disease where we have a name and all those rare diseases have something in common next to it they're quite rare yeah indeed so calm. and problems into common topics are for us the diagnosis is always very late in his patients because no one knows the disease no one thinks about the disease and. years in the system the way to find the diagnosis the 2nd problem is that it's not enough experts so if you imagine

a different great diseases you don't have to 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 somewhere in the world and to sirt common problem is that when there might be a chance to develop a new. treatment and new and new drac it's very difficult to convince the. industry to invest in this just with the army and it is not it's ok but it has been already addressed that all of these 3 problems a common and for that we need to centers what do you do better than i do i don't 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 are going to 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 that they come together you see a lot of patients with red diseases some patients there stick in your mind one patient for music most intense patient was a. girl which has been referred to the internet age of 6 months with severe obesity but just absolutely common and common interests in this age and. in addition to this extreme obesity as there was. endocrine hormone deficiency and it's a time even this symptoms to be have not been described in terms of

often disease and and it's 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 which we could explain the whole the whole disease and the diseases and name and the lucky part of this story is that after a long time we also successful due to developing new treatment was based on just recognition of the disease and in normal weight because you could you substitute what is missing and doctors can find diagnosis sometimes that the patient is making it up and then such a center for a disease this 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 legs since childhood back then no one took a seriously. myself just us and told my family planning that 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 a bit with that but the leg pains weren't taken seriously at all one of those acts people said i was imagining things us. and that went on for years but out of the axle 2 years ago she sought help at a center for disease in our. neurologist my code on examined her and pinpoint the cause of her problems after just 2 consultations. and. it was a weight off my shoulders of my heart and i finally knew what was wrong with me i said false. i always had the feeling that i had something rare but it was never investigated or confirmed. by us i'm because the doctors didn't believe me they thought i was faking it making it up and.

diana suffers from a rare genetic disorder fabry disease. that's highest hardest thing i've done it starts with neuropathic pain and burning tingling or stabbing sensations in your hands and feet and 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 send. diana was prescribed medication which he's been taking for 5 months she still has some pain but she's been improving for. month to month if i have any good at 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 back she's also stopped taking many other medications like antibiotics but most importantly she now knows for sure what's wrong them best not to feel that 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 next. the diagnosis has made all the difference finally diana sabir feels optimistic about the future again. and here's the scary statistic from germany about a rare disease this it takes an average patient with a radius of 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 the

news is they have no idea what they can expect no idea if if they ever find someone who can treat it so this uncertainty is really a problem and the 2nd point which is also. really really tough for the patients it's a few known into the system so there is no one can really discuss a disease and if you are ill you expect experts in the health care system and if you all of us on the phone someone said i don't know 3 fried no no this is really a problem that's right 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 addict problems if you really have to for a long time this uncertainty about your diagnosis just brings you. a completely different psychological level and. at the end you cannot really discriminate is

that of primary psychological disease or is it just not just or is that it's a reaction to a cinematic disease and you need. also for that an interdisciplinary team to take a lead and and we are working together with risk leaks from psychosomatic department so that we. offer the patients that we. 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 this wasn't mentioned disease is approximately 70 percent of our genetic and most of the money fast in childhood but 7 awesome also money 1st later in life so that you have tried to

under various suffer the symptoms but later on when you get really diagnostic tool we also need for the adult patients is also the genetic sequencing so that there's a new genetic techniques you see that even if you cannot treat it genetic disease it is still hard to give the patient the diagnosis estimates of prognosis of the patient so when it's a known disease it might be that we can expect after $45.00 for as the years of the disease course that possibly diabetes for money fast so we would not bait until the symptoms of diabetes so then you can screen for this money for station and this will help the patient. not to run into 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 also several diseases

where we can really treat and we can develop treatment based on the molecular defect we can find bugs 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 probably input for today's show thanks so much and keep sending your questions in. the not coming 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 send your questions to in good shape that d.w. dot com they key word is time management we look forward to hearing from you. and

not so rare disease is power release is also known as pressure for bladder rich is the fear of public restrooms in most of the cases people feel the germs in the restrooms but rest assured restrooms not that dangerous and germs everywhere. let's take a look at how they come into contact with bacteria and spread them around but where to bacteria hang outs are not every day surrounding. own which species. but how many germs actually stick. 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 louise's hands to begin

with the petri dish is used to collect the samples. professor rania mortars 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 caucus and stuff. we would expect a clean washed hand to yield about 50 colonies on a dish like this and this kind of plant louisa had $300.00 so quite a few times more than a few for the smock that maybe she didn't wash their hands properly or the towel she used to dry them wasn't cleaned up to 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 woman in he's good for a 5 weeks it's certainly never been washed and. the direct contact test shows that the sponge contains gut and skin flora 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 earlier we said picks up a few more bacteria. experts actually consider the metal bars in the stop button fairly harmless but. you're going to see large numbers of germs on the seat of your skin flora but also germs that shouldn't be there lie. acinetobacter high in other words someone sat here with a bacterium that could be a pathogen the crew transmitted in large numbers of it could cause an infection if it's also isn't dancing it was making perceive

a lot of. many people expect to find large numbers of but yet here but in fact the germ load on an escalator rail is quite low. something carts though are a different story there often lots of classic human bacteria on the grid mostly on the skin germs but also pathogens the cause diarrhea is to include the luckily there were no pathogens on it off with them but you do commonly find them on shopping carts is they pose a hygiene problem because they're rarely if ever cleaned him. louise's workplace is also a hotbed of punch area the sample from the door handles show $400.00 colonies. what's worse the telephone and computer keyboard both have too many cut and fecal bacteria on the germs can spread on down permanence. and is this even worse no not if the toilet is cleaned regularly. the 2 letter toilets

going to inspire fear but in this case there was nothing dramatic which time we found a large number of bacteria but no pathogens to worry about its contents or mom's or . louisa has come into contact with many different bacteria this morning how many of it here to her. reason in the course of the day louise is being contaminated with some bacteria that aren't necessarily pleasant alongside gut flora and enter a caucus there was a staff of the caucus laureus which is a pos forming germ and abandon us anita back on a germ that causes lung infections in hospitals in immune compromised patients especially when it's antibiotic resistant and come. up none of these are going to wash their hands it's a good idea to wash the 20 seconds after going to the toilet before eating and to try your hands thoroughly to keep the bacteria from multiplying. i personally can

understand why some are afraid to be in the dark because you can use darkness as. darkness you 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. yeah a lot of solace is i and i felt this really strong draw this 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. this room will be her shady 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 us a 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 on people fear could happen but experience shows differently i don't know of

a single case where this has actually happened. saskia 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. 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.

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