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Angehörige und Betroffene Autoren: Antje Krieger-Wehnsen, Eberhard Maurer Die Erkrankung Achalasie betrifft nicht nur den Betroffenen selbst, sondern auch sein gesamtes Umfeld, insbesondere die Familie. Dieser Text beleuchtet die Herausforderungen und Perspektiven sowohl der Angehörigen als auch der Betroffenen. Perspektive der Angehörigen: Die Stärke der Beschwerden und die aktuelle Lebenssituation des Betroffenen beeinflussen das gesamte Umfeld, einschließlich Familienmitglieder. Es ist belastend für Angehörige, mitanzusehen, wie ein geliebter Mensch unter den Schwierigkeiten beim Essen leidet, und das Gefühl der Hilflosigkeit ist oft stark ausgeprägt. Auch nach Diagnose und Therapie bleiben möglicherweise weitere Probleme und Einschränkungen bestehen, was für Angehörige schwer zu beobachten ist. Angehörige möchten helfen, fühlen sich jedoch oft hilflos angesichts der Erkrankung und suchen nach Wegen, unterstützend zu sein, ohne zu überfordern. Perspektive der Betroffenen: Die Art und Weise, wie Betroffene mit ihrer Erkrankung umgehen, kann variieren, aber wiederholtes besorgtes Ansprechen auf die Erkrankung, insbesondere während des Essens, kann stressig sein. Ein Übermaß an Ratschlägen kann für Betroffene belastend sein, obwohl die gute Absicht dahinter geschätzt wird. Trotz Schwierigkeiten und Einschränkungen benötigen Betroffene das Verständnis und die Unterstützung ihrer Angehörigen, insbesondere in schwierigen Momenten. Die Bewältigung der Achalasie erfordert oft spezielle Strategien beim Essen, Schlafen und anderen Aktivitäten, an denen auch Angehörige beteiligt sind. Gemeinsame Herausforderungen und Lösungsansätze: Die Erkrankung bringt Belastungen für beide Seiten mit sich, erfordert jedoch ein gemeinsames Verständnis, Geduld und offene Kommunikation ohne Vorwürfe. Die Bewältigung der Achalasie kann zu einer vertieften Bindung zwischen Betroffenen und Angehörigen führen und zu einem Bewusstsein für gesundes Verhalten beitragen. Auswirkungen auf Kinder von Betroffenen: Kinder reagieren oft einfühlsam auf die Belastungen ihrer Eltern, können jedoch auch Ängste entwickeln, die durch offene und klare Kommunikation adressiert werden sollten. Insgesamt zeigt der Text die komplexen Dynamiken und Herausforderungen, denen Angehörige und Betroffene gegenüberstehen, sowie mögliche Wege zur Bewältigung und Stärkung der Familienbeziehungen trotz der Erkrankung.

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.

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

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