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

Gemeinsam stark bei Speiseröhrenerkrankungen - bundesweit, engagiert und vernetzt Neubetroffen 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 Baden-Württemberg: Katharina Christ und Dirk Backmann regionalgruppe-bawue@achalasie-selbsthilfe.org Mitteldeutschland: (Sachsen, Sachsen-Anhalt, Thüringen) Dirk Backmann und Steffen Tschernow regionalgruppe-mitteldeutsch@achalasie-selbsthilfe.org Südwest: (Rheinland-Pfalz, Hessen, Saarland) Sylvia Heck regionalgruppe-suedwest@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 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. Send Knowledge gained through experience

Fragebogen 2 von 3 (PHQ-10) Achalasie-Selbsthilfe e.V. Haftungshinweis Impressum Datenschutzerklärung Transparenzerklärung

Fragebogen 3 von 3 (Erstellt vom Wissenschaftlichen Beirat der Achalasie-Selbsthilfe e.V.) Achalasie-Selbsthilfe e.V. Haftungshinweis Impressum Datenschutzerklärung Transparenzerklärung

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.

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

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

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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.

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. Weitere Themen Tipps für die Seele Empfelung PPI Einnahme