Neubetroffene Seite 9 von 9 Kontakt & Weiterführende Hilfe Hier einige Anlaufstellen und unterstützende Gruppen: Achalasie-Selbsthilfe e.V. Unsere Regionalgruppen sind deine Ansprechpartner Werde Mitglied Gastroenterologische Fachkliniken: Fragen Sie Ihren Arzt nach spezialisierten Zentren in Ihrer Nähe. Zur Startseite zurück

Specialist literature Patientenratgeber Prof. Allescher Klinikum Garmisch-Partenkirchen Patientenratgeber Dr. Albers Elisabeth KH Essen Glossar Rezension "Benigne Ösophaguserkrankungen"

Regionaltreffen 1 NRW 4.3.2017 Regionaltreffen NRW 30.3.2019 Regionaltreffen 2 NRW 22.6.2017 Regionaltreffen Nord 10.6.2017 Regionaltreffen Nord 24.8.2019 Regionaltreffen Bayern 12.7.2019 Regionaltreffen SüdOst 12.10.2019 Regionalgruppe Süd-West 7.10.2017 Regiotreffen BW 9.11.2019 Regionaltreffen Nord-Ost 28.10.2017 Regiotreffen SüdWest 28.9.2019 Regionaltreffen BW 04.11.2017 Regionaltreffen Süd-Ost 2017 Bericht Bundestreffen KEKS am 6.4.2019 Vorträge Bundestreffen KEKS am 6.4.2019 Regionaltreffen NRW 3.3.2018 Regionaltreffen Bayern 17.3.2018 Regionaltreffen Nord 16.6.2018 Regionaltreffen Süd-West 29.9.2018 Regionaltreffen Süd-Ost 27.10.2018 Regionaltreffen BW 3.11.2018 Mitgliederversammlung 7.3.2015 Mitgliederversammlung 2016 Mitgliederversammlung 2017 Mitgliederversammlung 29.9.2018 Mitgliederversammlung 2019 Mitgliederversammlung 2020 Regiomeeting-Online SüdOst 13.3.2021

Medikamentöse Therapie Das Dokument über Medikamente ist aus unserem Fachbuch aufbereitet worden. Zurück

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. Zurück

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

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.

Rezension des Buches 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.

News 2020 Special coronavirus information for achalasia sufferers Dear Members, Relatives and Interested Readers! The current exceptional situation caused by the coronavirus pandemic is hugely dynamic and is resulting in constant amendments and new rules of conduct. Knowledge of the various medical and social aspects of the pandemic plays a major role in coping well with all difficulties. The association work of Achalasie-Selbsthilfe essentially consists of providing information about the disease and orientation within the healthcare system. However, there is a special requirement for information at the present time, as we are increasingly seeing. In overcoming this crisis, good cooperation between the healthcare and social systems is of great importance. Every citizen is required to adapt their behaviour to the circumstances. In this section, we would like to inform all members of the specific consequences for achalasia sufferers, and in doing so supplement the familiar and widely distributed information regarding the coronavirus epidemic. Working in cooperation with the Scientific Advisory Board, the Board has compiled opinions pertaining to risk groups and recommendations. Here are a number of frequently arising issues: 1. As an achalasia sufferer, do I belong to the group of people at higher risk? Response of Prof. Dr. Burckhard von Rahden: “Achalasia itself should not normally constitute a significant risk factor for the severe progression of the coronavirus.” 2. However, situations are naturally conceivable: a. Aspiration with latent or acute pneumonia. Recommendation: In consultation with the attending physician, antibiotic treatment for bacterial pneumonia, fresh air and respiratory therapy for both forms of pneumonia b. Cortisone intake due to oesophagitis (eosinophilic, lymphocytic). Recommendation: Consult with your doctor c. Massively dilated oesophagus with compression of the lungs and associated reduction in respiratory capacity. Recommendation: Fresh air and respiratory therapy d. Antihypertensive medicines. Recommendation: In case of a questionable favouring of the risks of coronavirus, e.g. with ACE inhibitors (angiotensin-converting enzyme inhibitors), do not simply discontinue these, but rather consult the attending physician. New medication must be adjusted. e. When taking PPI (Pantoprazole, etc.) - reduced immune defence, if the reduced absorption of minerals/vitamins is not sufficiently compensated by nutrition. Recommendation: Supply minerals/vitamins orally if necessary, in case of iron deficiency administer i.v. if possible. Take vitamin B as lozenges/powder - do not overdose. 3. General risks: These risks are not related to achalasia, but are certainly significant for a number of achalasia sufferers a. Age b. Constitution c. Frequency of contact with other people d. Cardiovascular disease e. Lung disease f. Diabetes g. Smoking Recommendation: Take good care of yourselfes and follow the recommendations issued by the Robert Koch Institute. 4. It is certainly extremely useful to disseminate definitive knowledge and background information on the coronavirus crisis. However, it is necessary to identify and separate false reports and exaggerated worrying reports, and only to consistently apply the information that is personally important. It is necessary here to deal with an issue that is easily confusing: The (suspected) autoimmune disease achalasia is not the same as an immune deficiency. An immune deficiency manifests itself in a diminished resistance to infections and consequently in an increased susceptibility to diseases. With the development of achalasia, the immune system has within a limited period of time, turned against the body's own cells at the stomach entrance and destroyed them. However, it has not yet come to our knowledge here in our patients support group that there would be a fundamental increase in susceptibility to diseases after this time. 5. If you are planning a check-up appointment, you should first refer to the hospital website to find out what your hospital is currently communicating via their site. Individuals who are not exhibiting symptoms and who wish to keep their appointments should - if possible - seek medical help from a distance. However, if you have a scheduled hospital or doctor’s appointment during this time, talk to your GP’s practice or your doctor to ensure that you continue to receive the necessary care and consider whether appointments can be rescheduled. 6. Conclusion: In general terms, the majority of achalasia sufferers have no additional cause for concern due to their rare disease. They can follow the recommendations issued for all citizens. However, those affected by the risks described in point two should follow the respective recommendations. The Board of Achalasie-Selbsthilfe e.V. Strengthening health literacy Sufferers of a rare and chronic disease are confronted with a variety of demands on the management of the disease. Dealing with the disease raises many questions and leads to a high requirement for information and advice. Achalasia sufferers are required to · Manage health restrictions and disease symptoms that affect everyday life for decades · Deal with a non-transparent healthcare system that is not designed for dealing with rare diseases · Acquire a high level of knowledge · Develop the ability to identify the right place to resolve their health problems · Make informed decisions Those affected by rare diseases thus become experts in their own field The association Achalasie-Selbsthilfe e.V. essentially supports all sufferers and their relatives through its website and regional meetings. Members receive additional information. What is so special about Achalasie-Selbsthilfe? · Affected individuals receive information that they would not receive from professional parties · Affected individuals are provided with emotional support and extremely direct understanding of the difficulties they face · Fears can be alleviated · Relief through the “normalisation” of their situation, which is often perceived as exceptional Our information sources. · The brochure “Hilfe – Schluckbeschwerden!” [Help - Swallowing problems!] was streamlined and updated in 2019 · The reference book “Ein Leben mit Achalasie” was updated in 2018 and its evidence was improved · The website “Erfahrungskompetenz trifft Engagement” [Experience meets commitment] was renewed in 2018. It provides comprehensive and neutral information, empirical knowledge and decision-making aids. Furthermore, it also offers a personal guidance service via the inquiry fields. Auch unser Verein möchte mit der Zeit gehen, daher findet ihr uns ab sofort auf Instagram unter dem Namen @achalasie_selbsthilfe_ev, oder ganz unten auf dieser Seite den Link zu unserem Instagram folgen. Dort werden wir euch nun mindestens einmal wöchentlich mit interessanten Beiträgen versorgen. Hier könnt ihr natürlich mitgestalten, wenn ihr möchtet: Dafür könnt ihr uns gern eure Bilder, Lieblingsrezepte oder einfach eure Erfahrungen schicken. So können wir auch im Zeitalter der sozialen Medien gemeinsam über unsere Erkrankung aufklären und neue Kontakte knüpfen. Wir wünschen euch viel Spaß und freuen uns, wenn ihr uns auch auf Instagram verfolgt. Instagram Video über unsere Jubiläumsfeier YouTube Video von unserer neuen Regionalleiterin NRW Vanessa Kämmerling über unsere Jubiläumsfeier am 27.08.2022

Information und Aufruf zur Unterstützung von Achalasie-Betroffenen im Anfangsstadium Liebe Achalasie-Betroffene, mit diesem Schreiben möchten wir uns an all jene wenden, bei denen eine Achalasie vermutet wird oder die sich mit den typischen Herausforderungen im Anfangsstadium der Erkrankung auseinandersetzen. Ebenso richten wir uns an diejenigen, die von einem leichteren Krankheitsverlauf betroffen sind und dabei individuelle Fragen haben. Die Achalasie ist eine Erkrankung, die sich oft schleichend über Wochen, Monate oder sogar Jahre entwickelt. Der Weg von den ersten Schluckstörungen bis zur Diagnose ist häufig von Unsicherheit geprägt. In dieser Phase versuchen viele, die Symptome zu verdrängen, verschiedene Ansätze zu testen und sich mit Angehörigen sowie Fachleuten auszutauschen. Wir, die Achalasie-Selbsthilfe e.V., haben in der Zusammenarbeit mit Betroffenen und Kliniken viel Erfahrung gesammelt. Unser Ziel ist es, diese Erfahrungen weiterzugeben und Betroffene im Anfangsstadium besser zu unterstützen. Deshalb möchten wir auf einige Aspekte hinweisen: Offene Kommunikation: Teilen Sie Ihre Erfahrungen und Unsicherheiten offen mit Angehörigen und Ärzten. Auch wenn es manchmal unangenehm ist, kann Offenheit zu einer besseren Verständigung führen. Vergleich mit anderen Erfahrungen: Der Vergleich mit anderen Krankheitsverläufen kann helfen, die Diagnose besser zu verstehen. Unsere Selbsthilfegruppe bietet einen Raum für den Austausch von Erfahrungen. Umgang mit Ängsten: Ängste und Sorgen sind normal. Gespräche mit einfühlsamen Menschen sowie die gezielte Informationsbeschaffung können helfen, Ängste zu lindern. Persönliche Bewältigungsstrategien: Jeder geht anders mit der Diagnose um. Finden Sie Ihren eigenen Weg, sei es durch intensives Informieren oder durch behutsames Abwarten. Informationslücken schließen: Es gibt bisher wenig systematische Informationen zu leichteren Achalasie-Verläufen. Wir rufen daher dazu auf, Erfahrungsberichte zu senden, um gemeinsam mehr Klarheit zu schaffen. Schicken Sie Ihre Berichte gerne an vereinsbuero@achalasie-selbsthilfe.org Anonymität wird dabei selbstverständlich gewahrt. Gemeinsam können wir dazu beitragen, Informationslücken zu schließen und anderen in ähnlichen Situationen zu helfen. Wir freuen uns auf Ihre Unterstützung und danken Ihnen im Voraus für Ihren Beitrag. Herzliche Grüße Achalasie-Selbsthilfe e.V.

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