What is achalasia? In general, the term achalasia describes a malfunctioning of those parts of the smooth muscles of hollow organs (e.g. gullet, stomach, intestines) that have a closing function. What is achalasia of the gullet? In general, this describes the inability of the lower gullet sphincter (oesophagus sphincter or cardia) to sufficiently open for a lump of food to pass into the stomach. In addition to that the motility (peristalsis) of the entire gullet can be negatively affected. Causes and consequences of achalasia - dysphagia - malfunctioning peristaltic of the gullet - malfunctioning relaxation reflex of the lower oesophageal sphincter - malfunction of the upper oesophageal sphincter Sure facts At the cardia the nerve cells (neurons and ganglia) in the plexus (myenteric plexus/Auerbach’s plexus) are degenerated. This causes a tension of the lower gullet sphincter. Swallowing difficulties due to: Impaired mobility (peristalsis) of the oesophagus Impaired swallowing-induced slackening of the lower oesophagus Impaired function of the upper oesophageal sphincter Why? For this question, merely hypotheses can be formulated: autoimmune disorder degeneration and decay of cells, tissues and organs inheritance infection (viral) Symptoms spasmodic pain in the chest difficulties to swallow - with food getting stuck in the gullet regurgitation of undigested food from the gullet digestion problems e.g. bloating weight loss up to 20 kilos malnutrition cough attacks at night due to food reflux Das Leben mit Achalasie YouTube Video von Nicole Büsching im Interview mit unserer Regionalleiterin NRW Vanessa Kämmerling über das Leben mit Achalasie. Weitere Themen Diagnose & Behandlung Infos für leicht Betroffene Entscheidungshilfen zur Achalasie Behandlung Ernährung Achalasie im Kindesalter Verhaltensempfehlung

Information for sufferers with a mild form of achalasia and for those in the early stages of the disease This article is intended to address individuals who are suspected of having achalasia or who are dealing with difficulties that are typical of the early stages of the disease. Likewise those who are affected by a milder form of the disease and who therefore have their own personal questions. Achalasia does not begin with a sudden and unambiguous event, but usually develops gradually over the course of weeks, months or even years. Sometimes other simultaneous health events, occupational and family strains, etc., can be registered as suspected triggers. A long time often passes from the moment the swallowing disorder is personally perceived to the point of diagnosis. During this phase of uncertainty, some individuals attempt to repress the symptoms, make various assumptions, try to make changes to their eating and drinking habits, observe and change some aspects of everyday life, communicate with relatives, with professionals and much more besides. With a bit of luck, the doctor’s consultation quickly leads to a clear diagnosis, although sometimes also to misdiagnosis and incorrect treatment. In addition to the treatment recommendations from a specialist, personal body awareness is always the focus of a new life experience. It is very difficult to realistically assess the effects that this rare disease has on oneself, because there are - strictly speaking - many different forms. As a natural consequence, many sufferers experience a mixture of emotions, which can vary greatly in composition: Worry about the unknown limitations, fear of painful treatment, fear of aggravation, concern about existence, concern about a reduction in the quality of life - but also positive attitudes, optimism regarding improvement, resilience, confidence in appropriate help, confidence in support within the family, hope for improved healthcare and hope that things will not actually be that bad after all. Depending on their life situation and personality, each individual is required to deal with their own personal feelings and emotions. Some individuals are able to compensate for minor swallowing disorders with their own tricks and personally devised methods, and somehow live with them. Those who inform themselves about the clinical picture and the typical progression of the disease will come across a widely diverse range of views and representations. Many hospitals report on achalasia and describe their diagnostic and therapeutic possibilities. Research shows that hospitals apply a variety of different strategies. However, in general only the three most important types of achalasia are mentioned according to the Chicago Classification. The serious progressions of achalasia are then described, where clinical help is indeed essential. Milder progressions of the disease are not classified and described or differentiated anywhere. Furthermore, clinical studies do not make any assertions regarding the ratio of mild to moderate and severe disease progressions. As an affected individual, you may also be concerned that information on the internet could be influenced by specific interests (e.g. economic factors). Even leading members of Achalasie-Selbsthilfe only have a limited perspective of the ratio of mild to severe disease progression: Those who are able to cope with minor limitations caused by the disease usually do not contact the Achalasie-Selbsthilfe (it would be nice if they did...). Nonetheless, Achalasie-Selbsthilfe has accumulated knowledge gained from many years of experience. Every member is able to recall the time when the disease first appeared and is also happy to pass on this experience to new sufferers who submit inquiries via the website. The needs of sufferers of achalasia in its early stages, during the diagnosis phase and the search for suitable treatment for mild forms of the disease are addressed in the following. 1. The confusion that comes with unclear and indefinable symptoms can be countered by open communication with relatives and medical professionals. Although it may appear preferable to keep some embarrassing situations hidden away (e.g. from colleagues), openness is the best strategy. Few people possess knowledge of rare diseases, but finding someone with experience is still helpful. At the same time, everyone learns to describe their complaints in a more differentiated way. 2. A comparison with other disease courses involving swallowing disorders can lead to an approximate diagnosis. Looking at therapeutic methods is frequently unhelpful, and likewise the presumption of psychosomatic causes is of little use. 3. The inevitably arising fears and apprehensions form part of the reality. Understanding dialogue partners are helpful here. The information gathering steps that lead to possible diagnoses and prognoses provide further assurance. 4. The individual’s own personality is greatly influential during this orientation phase. Some individuals become a whirlwind of activity, searching intensively and almost desperately for every available opinion, to avoid making the wrong decision. The contrasting approach of others is to remain still and wait, in the hope that they will become confident of the right decision. Each individual can and should be allowed to develop his or her own very personal attitude when it comes to proximity and distance to the illness. 5. Little knowledge exists regarding the possible consequences of not treating mild achalasia. 6. Often, as the narrowing of the stomach entrance becomes more pronounced, there is a need for dilatation. It is not possible to definitively identify the right moment for this procedure on the basis of a gastroscopy. Furthermore, a barium swallow does not provide clear findings for the right moment either. Instead, it is the patient's subjective feeling that the impaired transport of the food bolus and the associated pain have become unbearable that gastroenterologists also rely on. 7. Some of the newly afflicted persons wish to avoid the treatment offered by the visceral medicine in hospitals, if possible and initially seek naturopathy therapies. Some good outcomes have been experienced with osteopathy and relaxation techniques. Trying these out can be worthwhile. Unfortunately, no systematic evaluations currently exist regarding proof of efficacy that are meaningful for achalasia. 8. Furthermore, there are unfortunately no targeted studies regarding the long-term progression of achalasia. No systematic research has been conducted to determine whether the dynamics of the oesophagus or the behaviour of surgical scars change with age. 9. Achalasia is considered a benign disease. However, medical experts primarily describe the treatment options for more severe courses of the disease. Only isolated personal reports of positive courses of the disease exist, where the constriction has regressed or come to a tolerable stop. It is however likely that there are some individuals, who are able to live quite well with a minor form of the disease. An unknown number of achalasia patients also exists, who can lead a reasonably normal life after one or more dilatations and do not require surgery. 10. As only insufficient epidemiological evaluations are carried out for rare diseases such as achalasia, many questions remain unanswered, in particular for those newly affected. Currently, the Achalasie Selbsthilfe e.V. is distinguishing itself by the introduction of empirical questionnaires. In addition, information from the sharing of experiences at regional meetings is evaluated. This creates a large pool of helpful data. It would be extremely useful if reports of experiences with healing progressions, also courses with minor problems, and inventive interventions could be sent to the association which then could subsequently be made available to all those seekking such information. We hereby kindly request that such reports be sent to us. Anonymity is guaranteed. This will hopefully help to close the existing information gaps described. Weitere Themen Tipps für die Seele Leben mit Achalasie - Resilienz Ernährung Roehrenpost 41.pdf

Ärztebroschüre Informationen über die Seltene Erkrankung Achalasie

Achalasia in Childhood Achalasia in childhood is extremely rare. The disease is already difficult to diagnose and more so in younger years as childhood achalasia is extremely rare and the little patients cannot precisely describe and locate their problems and symptoms. Achalasia is not a psychological problem!!! It is very problematic, if the disease shows at an age, when a psychological factor seems possible... Signs the breathing may become difficult, bubbly and “tight” the following regurgitation of the food is often without major convulsions and usually the child continues to eat the regurgitated food does not smell sour it is possible that remains of the last meal “come up” again later with some liquid – here, as well, no real signs of digestion especially dry food, vegetables with long fibres, certain fruits or raw vegetables tend to provoke regurgitation even toast and sweet rolls are difficult to eat (form a lump) Nutrition The criteria regarding the nutrition are similar to those of the adults. When the children are extremely young, it is again more difficult, as they cannot explain their problems accurately. The kind of food that often causes difficulties are mentioned above, but in the end, each patient has got his individual situation. Some procedures may be helpful: it is good for the children to chew properly (though quite wearisome, as the children often do not succeed in chewing sufficiently until the early teenage years (not to mention very small children!)) allow enough time to eat the meals without hectic and drink sufficiently food that turns into thin mush when eaten with liquid usually works quite well (plain biscuits, bread sticks...) Though, children who still eat baby food might even regurgitate this. It is the trial and error method. Some kinds of milk pudding might work as well, because these turn quite liquid with beverages and saliva (in contrast to baby lunch meals, that are thicker and sometimes contain little chunks) puree ‘normal’ food to make it ‘thin’ if the food gets stuck, it might help to get up and walk around a little or to lift the arms above the head. Tip: When the children are still small, they cannot control the regurgitation. It is then helpful to have a little bowl at hand. This reduces the hectic at the table (when the time has come) and also the mountain of dirty washing ... The way to the diagnosis it is very comforting for parents, when the paediatrician takes their worries seriously and acts resolutely (e.g. transfers the patient to hospitals/gastroenterologists, should he/she not be able to make a diagnosis) The children need the support of the family and it is a great burden for them, if other people think that they regurgitate on purpose. It has happened that the eating problems vanished after a gastroscopy had been made and then reappeared after 2-3 weeks. That was due to a small ‘dilatation’ made by the endoscope. Examinations Different examinations might be needed, either for diagnostic purposes or prior to a surgery. To mention are: The manometry of the gullet (pressure measurement), in the course of which the muscle activity in the gullet and the cardia is being monitored. The barium swallow (x-ray with barium as contrast agent), where you drink barium liquid that shows up as white on the x-rays. The procedure of the barium while swallowing it can be observed and evaluated. Both examinations are not very pleasant and, therefore, it is necessary that the children cooperate as best as possible. But the doctors in charge might have an idea how these examinations can be made a bit more pleasant (e.g. to improve the taste of the barium liquid...) Therapy Basically, children have the same treatment options as adults with achalasia: Surgery Dilatation Botox Every patient can and has to make the respective decision himself, but a trusted surgeon who is familiar with the disease will probably make a suggestion and give good reasons for it. Maybe, the hospital offers a medical aftercare, so that the little patients can receive further care after the surgery. Environment Very often, it is an even greater burden not to be able to eat properly, if you are in company of other people. With an understanding environment, it might prove good to handle the problems openly as this reduces unnecessary misunderstandings. Should it then happen that the food “takes the wrong path”, the alarm people not belonging to the family experience is much less pronounced and there is no sorrow to catch the stomach flu. Especially in the kindergarten and in school, the nurses and teachers might ask you less frequently to pick your child up.

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Nimm Kontakt auf! Die Regionalleiter beantworten Fragen zu fachlichen Themen wie Versorgungslandschaft, Kliniken und sie geben Informationen vor Entscheidungen. Bitte benutzen Sie dafür die Mailadresse in Ihrer Region. Überregional: Kontakt für Familien mit betroffenen Kindern und Jugendlichen Antje Krieger-Wehnsen a.krieger-wehnsen@achalasie-selbsthilfe.org Regionalgruppe Nord (Schleswig Holstein, Hamburg, Bremen, Niedersachsen) Dorothea Kästner und Giuseppe Sacco regionalgruppe-nord@achalasie-selbsthilfe.org Regionalgruppe Nordost (Brandenburg, Berlin, Mecklenburg-Vorpommern) Bernd Fels, Michaela Krzewina und Johanna Schönig regionalgruppe-nord@achalasie-selbsthilfe.org Regionalgruppe Mitteldeutschland (Sachsen, Sachsen-Anhalt, Thüringen) Dirk Backmann und Steffen Tschernow regionalgruppe-mitteldeutsch@achalasie-selbsthilfe.org Regionalgruppe Nordrhein-Westfalen Daniela Walbelder, Michel Sonntag und Maike Erdmann regionalgruppe-nrw@achalasie-selbsthilfe.org Regionalgruppe Südwest (Rheinland-Pfalz, Hessen, Saarland) Sylvia Heck regionalgruppe-suedwest@achalasie-selbsthilfe.org Regionalgruppe Baden-Württemberg Katharina Christ und Dirk Backmann regionalgruppe-bawue@achalasie-selbsthilfe.org Regionalgruppe Bayern Dr. Claudia Haug und Silke Gubo regionalgruppe-bayern@achalasie-selbsthilfe.org Bei Fragen zur Mitgliederverwaltung und für allgemeine Mitteilungen an den Verein verwenden Sie bitte dieses Feld Ihre Angaben wurden erfolgreich versandt. Absenden

Local points of contact Regionalgroup North Monika Sieg regionalgruppe-nord@achalasie-selbsthilfe.de Regionalgroup North-East Bernd Fels und Michaela Krzewina regionalgruppe-nordost@achalasie-selbsthilfe.de Regionalgroup South-East Dirk Backmann und Anna-Maria Siewior regionalgruppe-suedost@achalasie-selbsthilfe.de Regionalgroup North Rhine-Westphalia Eberhard Maurer und Antje Krieger-Wehnsen regionalgruppe-nrw@achalasie-selbsthilfe.de Regionalgroup South-West Silke Zuschlag und Sylvia Heck regionalgruppe-suedwest@achalasie-selbsthilfe.de Regionalgroup Baden-Württemberg Holger Piehler und Birgit Spiesberger regionalgruppe-bawue@achalasie-selbsthilfe.de Regionalgroup Bavaria Herbert Gollmitzer und Silke Gubo regionalgruppe-bayern@achalasie-selbsthilfe.de In Germany, we have got the following regional groups North (Schleswig-Holstein, Hamburg, Bremen, Lower-Saxony) North-East (Brandenburg, Berlin, Mecklenburg-Vorpommern) South-East ( Saxony, Saxony-Anhalt, Thuringia) North Rhine-Westphalia South-West (Rhineland-Palatinate, Hesse, Saarland) Baden-Württemberg Bavaria These regional groups get together at least once a year.

Objective Establishment of contact between achalasia-affected persons The possibility to get in contact personally with other achalasia patients in order to exchange experiences is probably the self-help group’s most important purpose. Small advices from other affected persons can possibly help to cope with the daily discomfort achalasia brings along. About 820 achalsia-affected persons from all over the world made contact with our self-help group, most of them coming from Germany, Austria, the Netherlands and Switzerland. But some are also from Poland, Croatia, Italy, Spain, France, Turkey, Belgium, Luxemburg, Great Britain, Mexico, USA and New Zealand. We currently have about 395 members. Organization of information events for achalasia patients Combined with the regular frequent meetings, separate events with achalasia-experienced physicians can be attended (in the course of the frequent meetings). How to make contact People with achalasia have the possibility to address to the group (by e-mail, telephone, etc.) who can then answer the questions directly or forward them to specialists. Registered organization The idea behind the foundation of a non-profit organization was on the one hand, to be a “collective voice” (motto: “Together we’re strong”) and on the other hand, to try to collect financial means in order to support research projects or to tackle new research plans. Furthermore, the Selbsthilfegruppe Achalasie e.V. files applications with the health insurance companies and provides its members permanently with latest information. Due to the co-operation with several clinics specialized in achalasia, the self-help group is always up-to-date. Its medium-term objective is to nationwide call the circles of experts’ attention to the results of the studies. The group organizes a major international achalasia symposium every other year. That way, it is the Achalasie-Selbsthilfe e.V. where all the threads come together. Your membership is not mandatory in order to be able to profit from our self-help group, but your membership fee does support the group’s activities. The organization is registered at the Amtsgericht Münster (district court) since 12th June, 2002 (VR4304). The advantages of an Achalasia-Selbsthilfe e.V. membership knowledge of the up-to-date reports from people with achalasia receipt of an emergency health card frequent information receipt of the book “Life with Achalsia” (3rd edition) (in German) invitation to activities and meetings possibility to contribute actively within the scope of a private social commitment the membership fee financially supports projects (e.g. preparation of documents, activities, studies…) Registered persons with no membership status in the self-help group merely receive invitations to activities and the up-to-date reports of people with achalasia. When dealing with chronic diseases, not only the patients are affected but also their partner and family. Our activities for the self-help group are a volontary social commitment. We are member of the “Allianz chronischer seltener Erkrankungen e.V.”= ACHSE (German National Alliance for Chronic Rare Diseases). Achalasie Selbsthilfe e.V. was accepted into the ACHSE organization on Friday, 24th October, 2008. The German National Alliance for Chronic Rare Diseases (ACHSE) e.V. is a network of patients’ organizations of children and adults with chronic rare diseases and their families. People suffering from a rare disease have to cope with very special problems. A lot of them are individual problems concerning the respective disease, some, though, are simply caused by the very rareness of the disease. The diagnosis alone can take excruciatingly long. Due to the fact that not many persons are affected, it is not profitable for physicians and the pharmaceutical industry to do the respective research. As a result, medication and other therapeutic methods are lacking. Unfortunately, there are only a few physicians who have more than merely heard of and have actual experiences with these specific diseases. ACHSE wants to call attention to these problems. In contrast to the situation in France, for example, rare diseases do not have a lobby in Germany. That is why the ACHSE is keen to push concrete solutions and to allow not only patients but also healthcare systems and authorities to have access to the various groups’ know-how. More than 120 self-help groups are united in the ACHSE e.V.. ACHSE considers itself as a network helping people to help themselves. The objectives of ACHSE are: To increase the general knowledge on rare diseases; to support the foundation and formation of supraregional self-help organizations for people with rare diseases; to link people with rare diseases and their self-help organizations; to politically represent the interests of people with rare diseases; to improve the information (knowledge?) of physicians and other therapists on the symptoms, diagnosis, course and therapy of rare diseases and to improve the communication with specialists; to enhance the co-operation of physicians, pharmaceutical industry and the self-help groups on the basis of transparency and independence; to push research in the field of rare diseases, their medicines (so-called “orphan drugs”) and further therapeutic options. More information on www.achse-online.de The Council of the European Union decided on action leagues which were to be introduced till 2013 in the member states. In a combined effort, ACHSE, the Federal Ministry of Education and Research and the Federal Ministry of Health develop suitable concepts. This gives reason to hope that in the foreseeable future there will be important progresses regarding the diagnosis, therapy, research, etc.. Weitere Themen Röhrenpost Infoblatt zur selten Erkrankung Empfehlung PPI Einnahme Schwerbehinderung Schmerzmedikation Schluckbeschwerden

Recommended behaviour for achalasia sufferers from achalasia sufferers It must be said that this is a collection of experiences from various affected individuals. However, some people find cold water helps, whilst others benefit from warm water. Therefore, please consider these recommendations as suggestions and try them out to discover what helps. Nutrition · Eat several small portions daily, chew thoroughly. · Replace normal food with baby food and infant food when necessary · Do not eat food with long fibres, or cut up very small. · (e.g. sauerkraut, asparagus, leek) · Cooked food is more easily digestible than spicy fried or uncooked vegetables. · When seasoning with pepper, paprika, garlic, curry, chilli, etc., reduce the quantities. Fresh and dried herbs can be used liberally. Just be careful with chives, these adhere to the wall of the oesophagus. · Try fresh fruit, in particular bananas, apples, pears, grapes, cherries, plums; opt for fruit that is low in fruit acid and is soft · Drink plenty of fluids: Tea, still water, apple spritzer and beer are generally well tolerated. · Caution: Supplementary food (high-calorie nutritional supplements) can cause intestinal cramps and diarrhoea · Aniseed and ginger help to prevent nausea. They are also available in form of candies. · All this helps to reduce, eliminate or prevent malnutrition. A balanced diet should primarily include basic (alkaline) and neutral foods. Because you are restricted in your food intake to a greater or lesser degree, you should try to eat a balanced and calorie-conscious diet and avoid acidification of the body. You can achieve this by eating predominantly alkaline and neutral foods. In addition to ensuring balanced acid levels in your body, a balanced diet also contributes to your personal well-being! Base and neutral foods largely balance out the excess acidity that you get from certain foods. Further tips from us · Do not eat for four hours before going to bed · Cola calms the gastrointestinal tract · Keep the torso upright (15-30°) when sleeping · Hobbies induce relaxation · Sport promotes well-being · Do not be a guinea pig What you can try to deal with chest cramps Medication · Centramine / liquid · Nitrospray (during hospitalisation) · Schüssler salts “Hot Seven” - 10 tablets dissolved in hot water · Buscopan spasmolytic suppositories · Tromcardin complex, 2x 1 tbl. · Novaminsulfon oral drops · Magnesium · PPI (Pantoprazole, Omeprazole etc.) · DILTIAZEM AL 60 for severe pain Food · Still water · Drink hot or cold water · White bread · Water with peppermint oil · Real liquorice · Cola · Nettle tea for heartburn · Gruel/porrige · Cold water, cold milk · Banana · Cold quark, yoghurt · Ice · Rusk · Dark chocolate · Manuka honey Miscellaneous · Osteopathy · Trigger massage · Reiki · Hot water bottle · Holistic healing practitioners/homeopathic practicioner · The vibration caused by a purring cat when it is lying on your chest · Take an inflatable (vein) cushion with you when you travel to raise the sleeping position Medical rehabilitation · Rehab after hospitalisation · At the latest 2 weeks after surgery · Hospital welfare service applies for follow-up treatment · Serves to build up nutrition, muscle development and mental stability · Costs are covered by the pension insurance or statutory health insurance · Includes intensive medical and physiotherapeutic treatment Objective · The restoration of physical functions, nutrition, mental stability and social reintegration Recognition as a disability Application to the healthcare agency responsible Joining the Sozialverband Deutschland VdK welfare organisation is expedient Contact: www.vdk.de Tips for coping with achalasia from patients for patients These advices have proved useful. When spasms occur, you could try “Zentramin sprint”. This is a recommendation from an achalasia patient in North Rhine-Westphalia. Nutrition reduce malnutrition eat a good amount of calories eat several small meals per day, chew properly when needed, eat baby food no food with long fibres or cut it into very small pieces (e.g. asparagus, leek, sauerkraut) cooked food is easier to digest than fried one or raw vegetables when spicing the food, take care with pepper of any kind, garlic, curry, chilli etc.. Fresh herbs (or dried) can be used lavishly. Though chives may be a problem as these herbs may stick to the sides of the gullet. try fresh fruit, especially bananas, apples, pears, grapes, cherries and plums. Fruit with less fruit acid is preferable. Do drink enough: tea, still water, apple spritzer (apple juice mixed with water) and bear is usually well tolerated Watch out: high calorie sip feed (food supplement) can cause intestinal spasms and diarrhoea Aniseed and ginger help when suffering from nausea (available as candy) A balanced diet should mostly contain alkaline and neutral food. As you have limitations regarding the intake of food to a greater or lesser extent, it is sensible to try to stick to a balanced diet and to avoid hyperacidity. This is possible by mostly eating alkaline and neutral food. Additional to achieving a good acid-base balance, a balanced diet improves your own personal wellbeing! Alkaline and neutral foodstuffs virtually equalize the excess of acid you obtain from certain kinds of food. You may find examples of such food under “food”. Follow-up treatment Rehab after a stay in hospital 2 weeks after the surgery at the latest In Germany the hospitals’ social services apply for the follow-up treatment It is necessary in order to normalize the food intake, to improve the muscle constitution and to stabilise the psyche. Medical rehabilitation The aim is to restore bodily functions, the function of the organs and the social reintegration. In Germany the pension insurance or the statutory health bear the costs Includes an intensive medical and therapeutic treatment Weitere Themen Ernährung Angehörige & Betroffene Praktische Hinweise zur Ernährung Leben mit Achalasie - Resilienz

Röhrenpost 41.pdf