Gemeinsam stark bei Speiseröhrenerkrankungen - bundesweit, engagiert und vernetzt Wegweiser für Neubetroffene Anker 1 Anker 2 Anker 3 Objective 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. 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. Knowledge gained through experience Recommended behaviour for achalasia sufferers from achalasia sufferers Anker 4 contact Get in touch Die Regionalleiter sind Ansprechpartner für fachliche Themen und geben Auskunft über die Versorgungslandschaft und Kliniken. Sie geben auch Entscheidungsunterstützung. Der persönliche Austausch steht im Fokus der Regionaltreffen. Überregional: Kontakt für Familien mit betroffenen Kindern und Jugendlichen Antje Krieger-Wehnsen a.krieger-wehnsen @achalasie-selbsthilfe.org Regionalgruppen: Nordrhein-Westfalen: Daniela Walbelder, Michel Sonntag und Maike Erdmann regionalgruppe-nrw@achalasie-selbsthilfe.org Südwest: (Rheinland-Pfalz, Hessen, Saarland) Zurzeit ist die Regionalgruppe Südwest nicht besetzt. Mail-Anfragen werden aber erfasst und bearbeitet. regionalgruppe-suedwest@achalasie-selbsthilfe.org Baden-Württemberg: Katharina Christ und Ingo Maulbetsch regionalgruppe-bawue@achalasie-selbsthilfe.org Mitteldeutschland: (Sachsen, Sachsen-Anhalt, Thüringen) Dirk Backmann, Steffen Tschernow und Silke Pagel regionalgruppe-mitteldeutsch@achalasie-selbsthilfe.org Bayern: Dr. Claudia Haug und Silke Gubo regionalgruppe-bayern@achalasie-selbsthilfe.org Nordost: (Brandenburg, Berlin, Mecklenburg-Vorpommern) Bernd Fels, Michaela Krzewina und Johanna Schönig regionalgruppe-nordost@achalasie-selbsthilfe.org Nord: (Schleswig Holstein, Hamburg, Bremen, Niedersachsen) Dorothea Kästner, Sylwia Mücke und Giuseppe Sacco regionalgruppe-nord@achalasie-selbsthilfe.org Please use this field if you have any questions regarding membership administration or for general communications to the organisation. Ihre Angaben wurden erfolgreich versandt. Senden Knowledge gained through experience

Ein kleiner Einblick, was bei unseren Regionaltreffen passiert Datum Regionaltreffen Uhrzeit Adresse Einladung 20. Juni 2026 Regionaltreffen Bayern 10:00 - 15:00 Uniklinikum Augsburg Stenglinstraße 2, 86156 Augsburg Einladung 24. Oktober 2026 Regionaltreffen Mitteldeutschland 10:00 - 15:00 Uniklinik Jena Genaue Infos folgen Herbst 2026 Regionaltreffen SüdWest und BaWü 28. November 2026 Regionaltreffen Nord 10:00 - 15:00 Uniklinik Lübeck Genaue Infos folgen Wir heißen natürlich nicht nur die Mitglieder der Region, sondern jedes Mitglied & deren Angehörige an allen anderen Treffen willkommen. Datum Stammtischtreffen Uhrzeit Adresse Einladung 08. August 2026 Stammtischtreffen Magdeburg 14:00 Café „Alt Magdeburg, Breiter Weg 8a 39104 Magdeburg (In der Grünen Zitadelle) Einladung

Ein Tag voller Austausch, Verständnis und echter Begegnung - Regionaltreffen NRW am 14.03.2026 Manchmal sind es genau diese Tage, die zeigen, wie wertvoll Gemeinschaft sein kann. So begann der Tag zunächst ruhig mit einer eher kleinen Runde bei der Mitgliederversammlung und entwickelte sich im Laufe des Tages zu einem lebendigen, gut besuchten Treffen mit rund 70 Teilnehmenden. Nach der Begrüßung durch die Regionalleitung und das Klinikteam startete der erste Vortrag, der den Schluckakt und die Achalasie verständlich und anschaulich erklärte. Besonders eindrücklich war eine Animation, die zeigte, wie komplex und fein abgestimmt dieser Vorgang im gesunden Zustand funktioniert und was sich durch die Erkrankung verändert. Ein Video zum Manometrie Selbstversuch an einem der Ärzte, begleitet von persönlichen Erläuterungen, machte die Diagnostik greifbar und nahm vielen die Unsicherheit vor dieser Untersuchung. Im zweiten Vortrag ging es um langfristige Therapieoptionen. Unterschiedliche Verfahren wurden vorgestellt und verständlich miteinander verglichen. Dabei wurde immer wieder deutlich, wie individuell Behandlungswege sein können und wie wichtig es ist, nicht nur die Therapie selbst, sondern auch die Zeit davor und danach in den Blick zu nehmen. Die vorgestellten Fallbeispiele sorgten für viele wiedererkennbare Momente und regten zum Nachdenken und Nachfragen an. Spätestens in der Mittagspause wurde das spürbar, was den Tag so besonders machte: Menschen kamen ins Gespräch, tauschten Erfahrungen aus, hörten einander zu und merkten, dass sie mit ihren Herausforderungen nicht allein sind. Es wurde gelacht, nachgefragt und manchmal auch einfach nur verständnisvoll genickt. Am Nachmittag ging es in Kleingruppen weiter durch vier verschiedene Stationen. Hier zeigte sich noch einmal besonders die Stärke des Tages: Zeit für persönliche Fragen, direkte Gespräche und ein offener Umgang miteinander. Ob bei der Ernährungsberatung mit praktischen Tipps für den Alltag, beim Kennenlernen diagnostischer Verfahren zum Anfassen, im Einblick in die Endoskopie oder beim Austausch über anhaltende Beschwerden, überall standen nicht nur die Inhalte im Mittelpunkt, sondern vor allem die Menschen. Fragen waren ausdrücklich erwünscht, Unsicherheiten durften offen angesprochen werden, und es wurde sich Zeit genommen, zuzuhören und verständlich zu antworten. Besonders hervorzuheben ist die Art und Weise, wie das gesamte Team durch den Tag geführt hat: mit Fachwissen, aber vor allem mit viel Menschlichkeit, Humor und einem spürbaren Respekt gegenüber den Erfahrungen der Betroffenen. Es entstand kein Gefühl von „Vortragenden“ und „Zuhörenden“, sondern vielmehr ein gemeinsamer Raum, in dem Wissen geteilt und Erfahrungen ernst genommen wurden. Der Tag endete mit einer gemeinsamen Fragerunde und mit dem Gefühl, nicht nur neue Informationen, sondern auch neue Perspektiven und Kontakte mit nach Hause zu nehmen. Zurück zu den Terminen

Erfahrungsaustausch für Betroffene der seltenen Erkrankung Achalasie. 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.. Zurück

Membership brings advantages! If you are interested in our patient support and you would like to become a member, you are welcome to do so here. Simply print out the membership declaration pdf, complete it and send it to the pre-printed address. What advantages do I enjoy as a member of Achalasie Selbsthilfe e.V.? • Receipt of an emergency ID card • Receipt of regular information on the website and through newsletters • Receipt of the book “Leben mit Achalasie” • Invitation to activities and member meetings • Option of active participation through voluntary social commitment • Membership fee delivers financial support to projects, such as the production of studies and articles • Assistance not only for sufferers themselves, but also for their partners and family members • Participation in the improvement of medical care structures in Germany and Europe • Personal advice from the regional managers • Information on the services offered by hospitals, clinics and practices • Information and support prior to making decisions T-Shirt nicht im Begrüßungspacket enthalten Leitvereinbarung zu Datenschutz Zurück

Fragebogen 1 von 3 (PHQ-15) Achalasie-Selbsthilfe e.V. Haftungshinweis Impressum Datenschutzerklärung Transparenzerklärung

Neubetroffene Seite 6 von 9 Ernährungstipps Hier einige praktische Tipps, wie du beim Essen dein Speiseweg erleichtern kann: Langsam essen und gut kauen. Weiche Speisen (z. B. Suppen, Breie) können hilfreich sein. Nach jedem Bissen etwas Flüssigkeit trinken, damit die Nahrung leichter weiterrutscht. Späte Abendmahlzeiten vermeiden – und mit erhöhtem Oberkörper schlafen. Kleinere Portionen essen, aber dafür öfter. Ein individueller Ernährungsplan kann helfen – spreche mit einer Ernährungsberatung oder einem Arzt. Ernährungsempfelungen Weiter

Willkommen im Mitgliederbereich Newsletter Röhrenpost Protokolle MV und Regiotreff Kliniklisten Anerkennung Schwerbehinderung Studien Empfehlung PPI Einnahme Satzung Informationen

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

Tips for nutrition Hier sind die Verhaltensempfehlungen und Tipps für Menschen mit Achalasie, basierend auf den Erfahrungen verschiedener Betroffener: Ernährung: Mehrere kleine Portionen und gründliches Kauen: Statt große Mahlzeiten sollten Betroffene mehrere kleinere Portionen über den Tag verteilt zu sich nehmen. Das gründliche Kauen hilft, die Verdauung zu erleichtern. Baby- und Kindernahrung: Bei Bedarf kann auf leicht verdauliche Baby- und Kindernahrung umgestiegen werden. Vermeidung von langfaserigen Lebensmitteln: Es wird empfohlen, langfaserige Nahrungsmittel wie Sauerkraut, Spargel und Porree zu vermeiden oder diese sehr klein zu schneiden. Gegartes Essen bevorzugen: Gekochte oder gegarte Lebensmittel sind oft besser verdaulich im Vergleich zu scharf angebratenen oder rohen Lebensmitteln. Maßvolles Würzen: Bei der Verwendung von Gewürzen wie Pfeffer, Paprika, Knoblauch, Curry und Chili ist eine niedrigere Dosierung ratsam. Frische Kräuter können reichlich verwendet werden, jedoch sollte bei Schnittlauch Vorsicht geboten sein, da er an der Speiseröhrenwand haften bleiben kann. Frisches Obst ausprobieren: Weiche und wenig säurehaltige Früchte wie Bananen, Äpfel, Birnen, Weintrauben, Kirschen und Pflaumen werden empfohlen. Viel trinken: Tee, stilles Wasser, Apfelschorle und gut verträgliches Bier sind generell gut verträglich. Vorsicht ist geboten bei Zusatztrinknahrung, da diese Darmkrämpfe und Durchfall verursachen kann. Gegen Übelkeit: Anis und Ingwer können bei Übelkeit helfen und sind auch in Bonbonform erhältlich. Weitere Tipps: Vier Stunden vor dem Schlafengehen nichts mehr essen: Eine längere Essenspause vor dem Schlafengehen wird empfohlen. Cola kann den Magen-Darmtrakt beruhigen: Cola kann in manchen Fällen helfen, den Magen-Darmtrakt zu beruhigen. Oberkörper im Bett leicht erhöht lagern: Ein leicht erhöhter Oberkörper (15-30°) im Bett kann helfen, Beschwerden zu lindern. Hobbys und Sport: Hobbys zur Entspannung und regelmäßiger Sport werden empfohlen, um das Wohlbefinden zu fördern. Nicht als Versuchskaninchen agieren: Es wird geraten, vorsichtig bei neuen Therapien oder Experimenten zu sein. Zurück Weitere Themen Tipps für die Seele Empfelung PPI Einnahme

Neubetroffene Seite 7 von 9 Nachsorge & Leben mit Achalasie Nach der Therapie ist regelmäßige Kontrolle wichtig: Endoskopien oder HRM Manometrien zur Nachkontrolle. Psychische Unterstützung: Der Austausch mit anderen Betroffenen kann viel bewirken. Beobachtung von Reflux – besonders nach Myotomie oder POEM. Anpassung der Ernährung, wenn nötig. Das Leben mit Achalasie kann wieder sehr lebenswert sein – viele Patient:innen berichten von deutlicher Verbesserung nach der Behandlung. Weiter