Even know if think about and im going to need a little piece of paper and suffering from Cystic Fibrosis and im going to need his Pediatrician Dr bach i hear it to his clinic in a from being in really welcome. To. Come. Due to medical progress and the integrated care and Specialist Centers people affected by Cystic Fibrosis nowadays live a lot longer and better than it used to be and theres new hope on the horizon. Cystic fibrosis is a genetic disorder it has and clocks up the body even the organs you cannot cure Cystic Fibrosis but you can treat it but early action is essential. A blood test that can make all the difference the doctors want to know whether baby leon has Cystic Fibrosis the test is now a standard part of the screening procedure for newborns in germany it can also reveal other metabolic disorders and hormone irregularities. He has vowed to see as a mother im really happy and grateful that we have this test here and how to care because the third any problems and of course we certainly hope there arent they can at least be treated straight away. Havent been that food said. A few drops of blood are sufficient to identify Cystic Fibrosis which is caused by mutations in a single gene. Cystic fibrosis affects multiple organs some patients go through a lot of suffering but its unfortunately not something you can see right away just by looking at a newborn and pediatricians cannot recognize that a baby has the conditions were for even though its already developing at this point were causing irreversible damage to the childs lungs and pancreas and of acting as development. Confirming a diagnosis of Cystic Fibrosis requires several tests if a bio chemical analysis turns up positive a d. N. A. Test follows mid arm screening for. Last remaining shows right away shortly after birth whether the baby is healthy or whether it needs to be referred to a Cystic Fibrosis center for treatment and. Thats a huge advantage as it means any children affected who have the condition then receive adequate treatment right from the start before it causes major and lasting damage to their lungs or other organs tom is six he wasnt diagnosed with Cystic Fibrosis until he was three and those years have left their mark on his body. To the see whole issue and share his lungs will certainly have sustained damage that we can no longer reverse all we can do is give him the best possible treatment now so that he doesnt deteriorate further. Certainly worse off than children who get screened at birth. Because of the Cystic Fibrosis toms lungs and intestines are constantly blocked with mucus his parents noticed that their son stomach was bloated and that he had gastrointestinal problems as ever as he would go to the toilet anything from seven to ten times a day he had really bad fatty stool and tummy aches he was still wearing diapers and they were always so greasy and smelled really unpleasant we knew something wasnt right. In the. Home also had regular lung infections that had to be treated with antibiotics the boy wasnt growing much either or putting on weight. Of others and us walk he was tested for all kinds of things but not Cystic Fibrosis we ran from one doctor to the next no one believed us everyone had a different opinion but nothing house would and. Finally at the University Hospital and heidelberg their son was diagnosed correctly it was a huge shock for his parents for the rest of his life tom will have to battle the thick mucus in his lungs he needs to inhale for fifteen minutes three times a day physiotherapy helps release the thick mucus in his respiratory system so that he can cough it up more easily the exercise also improves his physical fitness another positive factor in fighting the same curable disease. Tom also needs energy rich food malnourishment is a constant looming risk. Can i have creams leave. Enzyme supplements help to support the function of the pain koreas so he benefits more from his food and the measures are working tom has now put on weight and hes growing again. All of the treatments whether inhalation physiotherapy enzymes or high energy food have one thing in common the earlier they start the longer the patient can expect to live so screening newborns can help the probability of baby leanne having Cystic Fibrosis is one in two thousand but for those children who are affected her early diagnosis can make all the difference. I hear the heat is clean even if im beating in berlin and im talking to dr bach im a list of Pediatric Medicine and youre actually european knowledge. And ive got a family here with blue to do suffering from Cystic Fibrosis and speaking to his father marcus thanks for writing today and he talked about how we just saw a report about the newborn screening whats your opinion on this. In general newborn screening is a very good idea and a very useful program to detect serious diseases way early so that specific treatment can be instituted and this makes a Better Program assistant i guess there is evidence for that terms of the respiratory involvement but for the nutritional state its been proven in other countries that have had experience with newborn screening for many years already. Really is better in children. Are detected by newborn screening who with us suffering from Cystic Fibrosis can see the father when you first realize that this is not an ordinary cough and an ordinary flu a little bit and went to Nursery School in the first week he went three or four times and shortly after that it started to head home. At first like he just had a normal cough and runny nose but then the symptoms didnt go away they just got worse they got so bad he couldnt sleep through the night he had coughing attacks and couldnt sleep neither could we went so so you ordered this with test so this is a normal diagnostic procedure i guess thats the traditional and the most sensitive tests thats been developed more than fifty years ago. Thats also the test thats being done for confirmation of newborn positive newborn screening and with this sweat test we can differentiate and we can detect the vast majority of Cystic Fibrosis patients so what is going wrong in the organism in patients with Cystic Fibrosis basis really of Cystic Fibrosis is. An alteration in the genetic code and this leads to a defect in salt and water transported across. Salie so are responsible for secreted. Water into the lungs for example the bronx. Justice system because after the diagnosis a lot of things to change to your family hows your life now was similar to the first you have to deal with it mentally not just as individuals but also as a couple because the disease and its effects hang over our lives every day and suddenly your life is about focusing on this disease. But not in negative ways. All kind of had also learned that the more involved you are bigger the difference it makes on the life of your child. You know you can help them feel better. So thats why in dealing in life youre focused on the disease because. So whats the most important thing in the therapy of Cystic Fibrosis one important thing we heard is the administration of pancreatic enzymes to help compensate the problem in the digestive fisherman. So treatment is directed towards the lung involvement with maybe creation to help loosen the secretions to help fight bacteria in the airways if they are detected and also an active lifestyle and measures of physiotherapy to help clear the airways from their creations so its not going to the doctor and the medical team who helps the patients the patients can do a lot of themselves like hazel. Who is taking advantage of. Felix clark regularly has shiatsu treatments he stuff is from Cystic Fibrosis and has found a japanese must watch technique very helpful. There are really not that good ones of i have terrible coughing attacks in the morning and shots are really helps me to relax fully that in turn has a positive effect on my breathing that youve also. Shiatsu involves applying very gentle pressure physiotherapist tries to move from the center of her body outwards but in shoes the entire process is controlled and smoothed she was and she answers a form of therapy that involves both contact and movement. Its about stimulating the energy in the bodys meridians the same meridians that we know from acupuncture so its holistic it addresses body mind and soul and thats quite different from just trying to make symptoms disappear. Felix is on the waiting list for a Lung Transplant four times a year he has to go for a long test. The average Life Expectancy for a Cystic Fibrosis patient is around forty felix is already forty eight. Yes i now breathe out out out as long as you can you know thanks to progress in medicine people with Cystic Fibrosis today unlikely to live a lot longer than they did in the past alternative treatment methods can also help improve quality of life. And cost of what but to one of the big advantages of this kind of complementary medicine to suit his that it allows the patient to do something for themselves some kind of position which gives them the feeling that they can have a positive effect on their condition and can actively improve their health. And thats important so if especially with chronic illnesses it was also the heart of the clinician icon. Felix when asked by shiatsu he says the treatments have made a huge difference in how he feels. You have to experience it for yourself to understand it totally relaxes you but its also vitalizing at the same time. Despite his serious lung problems felix good luck has found something that helps him to be optimistic about the future. While his exercise that important in Cystic Fibrosis being active have a lot of positive effects helps clear and cough up secretions if a better muscular shape helps them get along in everyday life so our advice to adopt an active lifestyle from early age on like ludo is an important part of our regular recombination course is the progress of the patient and what about physiotherapy physical therapy is one cornerstone an important part of the current growth treatment patients have like a ten to fifteen Minute Program of reading exercises that they do for themselves every day. Lets take a look on a very difficult topic on prove now this is the page let like a little home made patients right now with the prediction for newborns that are picked up are diagnosed today with Cystic Fibrosis is that they will reach about an age of fifty average would why variation Different Things as a whole load of patients are all this patient has turned seventy two just recently she is still being cared for on our pediatric ward and is very happy with the care that our Pediatric Team delivers to her but shes an exception so whats on the horizon when you think about to command there is a chance at the real the cure some years ago theres been a very blue sion with a new type of drugs that can be administered do you know type specific so depending on what kind of genetic defect a certain patient have they do not only type symptoms like pick secretion but they sort of repaired the consequence of the genetic defect and help to restore their water and soft transports and they have had Great Results at the moment only for a small group of patients with certain types of genetic defects but theres a lot of new compounds in studies that will probably be released in the next couple of years so there is good reason for patients and the medical community to be optimistic i think it about all the interesting information and i was going to visit the family again. Well. So im back to his family now how do you think you do with the future as you know that. We dont try to look too far into the future we hope that he stays relatively symptom free for as long as possible we are a little worried about puberty because weve heard that can be a difficult time but were trusting in modern health care has been here steps made there in the last few years we might actually see the day when it can be healed it was. And whats your advice for families for side with a certain disease. If you have to have a positive attitude about this disease that can move mountains thats the thing that helps a family to break through and to change. Thanks for sharing your story with me and i will continue with. My. Interests now topic for you. Would you like a chance to win a fitness backpack just tell us your favorite home remedy for treating stomach aches. All stress send your ideas to in good shape d w dot com by march the eleventh be sure to write household remedies in the subject line we look forward to hearing from you. Im very curious what you all sent me and i guess you are very curious about the topic and here. Exercise is good for us. For right but you will be surprised that people will tell you. Do it. Yourself you know loves to jog she used to go four or five times a week but while she was living in south africa last year she suddenly developed problems as it started again when i had while i was out jogging i started to feel pain below my right knee it was directly on the bone like a heavy eight. On longer runs it started to hobble me and sometimes right after i finished jogging i noticed it was slightly swollen. And. Churning her teaching internship in cape town she was always on the go taking trips and hiking she jogged home from School Every Day despite the pain. I mean saw i didnt have to running through the pain that i try to ignore it thinking it had something to do with me playing so many sports and that it would go away on its own. But the pain persisted even after she scaled back her workouts. Back in germany she went to see an orthopedist who suspected a stress fracture. Or stress fractures or socalled fatigue fractures or a kind of gradual fracturing of the bone food too much physical exertion or exercise can damage bones and that can lead to stress fractures and we do. Have these fractures are not the result of falls or accidents they develop as hairline cracks felt for example of the bump on the leg its important not to underestimate such injuries. If their fleets continue to exercise through the game they risk a full bone fracture in fact. The pain is a warning sign to discontinue exercise and seek help. An x. Ray of yosef in his leg confirmed the diagnosis of stress fracture oh. If she had only jogged two or three times a week this almost certainly would not have happened. But a strain of the exercise was too much and in her case that led to the development of a stress fracture. Another factor is that you as a female ran almost exclusively on asphalt that can also lead to excess strain on bones the doctor ruled out other possible causes in her case such as osteoporosis or malnutrition stress fractures usually occur on the lower limbs and rarely require casts or splints they mostly heal on their own with rest after a few weeks its possible to start swimming or biking again for josefina the diagnosis was a shock how much trauma or not bellamy i was in they say this could happen to someone whos only twenty three and totally fit ive always done loads of sports so i had a certain level of fitness and thought this kind of thing wouldnt happen to me you need. After a two month break from sports josefina stress fracture was healed. Now shes back at the gym where she does Strength Training and bike workouts. What as im super happy to do sports again because its really important to me after working out four to five times a week feel he is it was really strange to do nothing it was unfailing for someone whos always active and on the go. So its good to be active again and of course im happy that theres no long term damage and now i can work out without any pain i mean its my view too. So rest and vary your workouts josefina he shared has learned to reduce her running a bit in favor of other sports. Oh yeah listen to me forty two percent. With nobody coming to their rescue. Ninety percent. Evil character and twenty five percent are in mortal danger what no im not talking about the team of in good shape im talking about nightmares every one of us has them but not every night if you chase every single night then. Every night the same recurring nightmare. Or more that im going to be murdered and have been murdered. Every night yasmeen because it would feel the panic rising knowing the dream would return to the front. In the nightmare i was already dead the murderer was in the room i could see him and feel him there because terrible pain i didnt feel the pain of being murdered i was already dead the pain was knowing the killer was in the room and i couldnt do anything about it when he. Killed her dreams almost every night that was the nightmare yes make has suffered since childhood for decades the architect was afraid what the night might bring she was scared to fall asleep. In mine at the high point i had work one hundred forty hours a week sleeping two to three hours a night or not at all social often order got as a rule i wouldnt sleep at all only for two nights in november and december but i generally be unable to sleep at all or hardly at all. There was no escape nights became days and days were torture she was among the five percent of germans who suffer from recurring nightmares. Desperate to break the cycle yes make i went to a trauma clinic at the university of frankfurt they offer help for extreme cases. After i had met my dreams like these cause people to be less effective at work and prevent them from taking care of their children as well as theyd like to but were talking about at this point goes beyond the realm of a normal nightmare. For me now asking. There is a therapy designed to help the main idea behind this method involves not repressing the dreams during the day or at other waking t