The 4th edition of the reference book “Ein Leben mit Achalasie” was published in 2018. New members receive this with the welcome pack. Current members can order it for the special price of € 25 including postage. All experts and interested parties can purchase it for the price of € 38.50 including postage. The book can be ordered from the treasurer Tanja Zuhmann. Print the attached order form, complete it and email it to kassenwartin@achalasie-selbsthilfe.de . Dispatch takes place after receipt of payment. Review “Ein Leben mit Achalasie” This book, first published in 2008, is, to our knowledge, currently only complete information (in German) on achalasia. It covers all important topics and has now been fully updated and its layout improved. Above all, the editors and the 14 authors take into account the new rules for good patient information: As complete as possible and with the greatest possible volume of evidence (truth claim). Most of the articles have been updated. Among other things, the medical section has been supplemented with comprehensive information on POEM, the Chicago Classification and the Eckard Score. Newly inserted is also an interesting article on drug therapy written by a pharmacist. Furthermore, there is an extremely useful article on the psychological connections in the area of concomitant diseases/comorbities. The decision-making dilemma that many affected persons are still faced with - dilatation or surgery - has been addressed and professionally elaborated in several chapters. Rare diseases are neglected in the healthcare system, which is why the editors were keen to include chapters on prevention, minimum quantity regulation, personalised medicine, complementary medicine and the care landscape. In its 15 years of existence, the diverse activities of Achalasie-Selbsthilfe have led to a wealth of knowledge gained through experience. This knowledge is illustrated in the chapters - Philosophy of life - Regional work topics - Lack of understanding - prejudice-discrimination - Help with decision-making - Resilience - Perspective of sufferers and relatives - Personal strategies for nutrition - behavioural strategies. This new edition now contains the medical histories of sufferers in a relevant selection with a considered structure. The additional tabular form enables sufferers to make a better comparison with their own disease progression. The editors have provided a dedicated form for readers to contribute feedback and to submit additions and ideas for the next edition. The huge conceptual and creative effort put into this complex work has certainly paid off. The benefit has increased considerably. Thousands of items of information about achalasia can certainly be found on the internet by now. Many of these are based on interests and few are oriented towards the increased needs that actually arise when living with achalasia. The primary target groups of this publication are specifically those suffering from achalasia and their relations, whose many questions require answers. Holistically oriented specialists will certainly also benefit from it, because the topics of diagnostics and treatment are accompanied by descriptions of the many facets of this rare disorder.

Achalasie-Selbsthilfe e.V. Selbsthilfeorganisation für Speiseröhrenerkrankungen Erfahrungskompetenz trifft Engagement ! HILFE VOR ORT - BUNDESWEIT AKTIV - INTERNATIONAL VERNETZT Neubetroffen Weitere Infos 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 Kontakt für Familien mit betroffenen Kindern und Jugendlichen a.krieger-wehnsen @achalasie-selbsthilfe.org Antje Krieger-Wehnsen 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. Regionalgruppe Nordrhein-Westfalen regionalgruppe-nrw@achalasie-selbsthilfe.org Daniela Walbelder, Michel Sonntag und Maike Erdmann Regionalgruppe Südwest regionalgruppe-suedwest@achalasie-selbsthilfe.org Sylvia Heck Regionalgruppe Baden-Württemberg regionalgruppe-bawue@achalasie-selbsthilfe.org Dirk Backmann und Steffen Tschernow Regionalgruppe Bayern regionalgruppe-bayern@achalasie-selbsthilfe.org Dr. Claudia Haug und Silke Gubo Regionalgruppe Mitteldeutschland regionalgruppe-mitteldeutsch@achalasie-selbsthilfe.org Dirk Backmann und Steffen Tschernow Regionalgruppe Nordost regionalgruppe-nordost@achalasie-selbsthilfe.org Bernd Fels, Michaela Krzewina und Johanna Schönig Regionalgruppe Nord regionalgruppe-nord@achalasie-selbsthilfe.org Dorothea Kästner und Giuseppe Sacco Please use this field if you have any questions regarding membership administration or for general communications to the organisation. Ihre Angaben wurden erfolgreich versandt. Send To become a member please use this link Knowledge gained through experience

The Board of Directors Hans Jürgen Hermanns 1. Vorsitzender und Betreuer Regionalleiter Dirk Backmann 2. Vorsitzender Tanja Zuhmann Kassenführung und Mitgliederverwaltung Dr. Claudia Haug Antje Krieger-Wehnsen Kinder- und Jugendbetreuung, Patientenvertreterin für Achalasie im Referenznetzwerk ERNICA Thorsten Meyer IT-Administrator Bernd Fels

Ein kleiner Einblick, was bei unseren Regionaltreffen passiert Datum Veranstaltung Uhrzeit Adresse Einladung Wir heißen natürlich nicht nur die Mitglieder der Region, sondern jedes Mitglied & deren Angehörige an allen anderen Treffen willkommen.

Ehrenmitglieder Hartwig Rütze Ehrenvorsitzener Eberhard Maurer Ehrenmitglied Der Verein hat im Rahmen seiner Mitgliederversammlung am 22.03.2025 seine ersten Ehrenmitglieder ernannt.

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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. Regionalgruppe Nord Dorothea Kästner und Giuseppe Sacco regionalgruppe-nord@achalasie-selbsthilfe.org Regionalgruppe Nordost Bernd Fels und Michaela Krzewina regionalgruppe-nord@achalasie-selbsthilfe.org Regionalgruppe Mitteldeutschland Dirk Backmann und Steffen Tschernow regionalgruppe-mitteldeutsch@achalasie-selbsthilfe.org Regionalgruppe Nordrhein-Westfalen Vanessa Kämmerling und Antje Krieger-Wehnsen regionalgruppe-nrw@achalasie-selbsthilfe.org Regionalgruppe Südwest Silke Zuschlag und Sylvia Heck regionalgruppe-suedwest@achalasie-selbsthilfe.org Regionalgruppe Baden-Württemberg Andreas Woge 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

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Erläuterungen zum Fragebogen und PDF Fragebogen

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. Nutrition brochure Practical advice on nutrition Manuka Honey Weitere Themen Tipps für die Seele Empfelung PPI Einnahme

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.

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