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  • Decision aids for treatment | Achalasie

    Dilemma in the decision on achalasia treatment Botox – Dilatation – Heller Myotomy – POEM? What is right for me? Highly complex questions and issues arise in this situation: · Some achalasia patients still experience a sense of unease after consulting their doctor. · What is the balance between the expected improvements and the risks? · Which studies are relevant for me? Studies on this topic have been conducted under highly varied conditions and can be interpreted in different ways. · Operations are irreversible treatments and are decisive cuts in life · How can I orientate myself? · Which doctor do I have sufficient confidence in? · What interests could play a role? · The proximity of the hospital and its treatment options? · What long-term effects can be expected? The route to a decision · Clear diagnosis · Applying specific personal condition as a basis · Detailed patient briefing with the doctor · Addressing personal fears and concerns · Increasing knowledge regarding treatments · Informing yourself about the care landscape · Obtaining a second opinion · Contacting the health insurer · Requesting comparative statements from Achalasie-Selbsthilfe · Finally: Trusting your own gut instinct Weitere Themen Vergleich zwischen der Heller Myotomie und Dilatation

  • Advantages of membership of Achalasie-Se | Achalasie

    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

  • Reference book “Ein Leben mit Achalasie” | Achalasie

    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. ​

  • Newsletter Röhrenpost | Achalasie

    Newsletter Röhrenpost Röhrenpost 13 Röhrenpost 26 Röhrenpost 12 Röhrenpost 25 Röhrenpost 24 Röhrenpost 11 Röhrenpost 10 Röhrenpost 23 Röhrenpost 36 Röhrenpost 9 Röhrenpost 22 Röhrenpost 8 Röhrenpost 21 Röhrenpost 20 Röhrenpost 19 Röhrenpost 7 Röhrenpost 6 Röhrenpost 32 Röhrenpost 33 Röhrenpost 34 Röhrenpost 35 Röhrenpost 31 Röhrenpost 18 Röhrenpost 5 Röhrenpost 30 Röhrenpost 29 Röhrenpost 17 Röhrenpost 4 Röhrenpost 16 Röhrenpost 3 Röhrenpost 28 Röhrenpost 16 Röhrenpost 2 Röhrenpost 27 Röhrenpost 14 Röhrenpost 1

  • Aufruf zur Unterstützung | Achalasie

    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.

  • Childhood achalasia | Achalasie

    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. ​

  • Specialist literature | Achalasie

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

  • Objective | 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.. ​ Weitere Themen Röhrenpost Infoblatt zur selten Erkrankung Empfehlung PPI Einnahme Schwerbehinderung Schmerzmedikation Schluckbeschwerden

  • Web links | Achalasie

    http://www.achse-online.de/de/ http://www.achalasie-konsortium.de/ http://www.achalasie.com/forum-neu/ http://www.namse.de/ https://www.rareconnect.org/de/ https://www.se-atlas.de/home/ https://www.vdk.de/deutschland/ https://keks.org https://www.soma-ev.de/home/ https://www.achalasia-action.org/home.html ACHALASIA ACTION ​

  • Anerkennung Schwerbehinderung | Achalasie

    Anerkennung als Behinderung in Deutschland Nach der VERSORGUNGSMEDIZINVERORDNUNG – VersMedV – kann eine Beantragung einer Schwerbehinderung gestellt werden. ​ Wenn mit dem Grad der Behinderung und dem Grad der Schädigungsfolgen das Maß für die Beeinträchtigung der Teilhabe am Leben in der Gemeinschaft gemeint ist, wird einheitlich die Abkürzung GdS benutzt. ​ Was gibt es zu beachten ist, beim Antrag auf einen Grad der Behinderung (GDB), dass die Bearbeitung zügig geht. Beitritt zum Sozialverband Deutschland VdK sinnvoll. Kontakt: www.vdk.de Der Antrag auf Schwerbehinderung wird an die Verwaltung des Kreises oder Landratsamt gestellt. Zu den schriftlichen Unterlagen gehören: Antrag, der Verlauf der Krankengeschichte und Arztberichte, Lichtbild sowie eine Alltagsbeschreibung des Antragstellers. Die aktuellen Arztberichte sollen nicht älter als 12 Monate sein Wichtig ist eine gute Alltagsbeschreibung mit sämtlichen Einschränkungen verschiedener Ursachen. Bei Ablehnung des Antrages oder zu wenig GdS kann innerhalb einer Frist ein formloser Widerspruch eingereicht werden. Der Anwalt des VDK berät den Antragsteller bei der Formulierung der Gründe des Widerspruches. Bei einem Antrag auf Erhöhung des GdS ist Vorsicht geboten, weil das Ergebnis zu einer Löschung oder Minderung des GdS führen kann. Bei der Antragstellung hilft auch der VDK. Ab 30% GdS kann eine Gleichstellung auf Schwerbehinderung erfolgen. Dies kann abgelehnt werden, wenn bestimmte Kriterien nicht erfüllt sind. Bei Gutachten des Arztes zum Krankheitsverlauf des Antragstellers ist es ratsam die Formulierungen aus der GdS Tabelle zu benutzen. ​ ​ Anerkennung einer Schwerbehinderung

  • Scientific Advisory Board | Achalasie

    Scientific Council ​ The organization established a scientific council. Its function is to provide expert advice and to mentor our studies. The Scientific Council is part of the Extended Executive Board. Dr. Stephan Ortmanns Dr. Claudia Haug Hartwig Rütze Eberhard Maurer Prof PH dG. Lenka Scheerer- Neumann i.R. Sigrid Mahnke

  • Local points of contact | Achalasie

    Local points of contact 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. 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 ​ ​

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