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Neubetroffene Seite 3 von 9 Typische Symptome der Achalasie Schluckbeschwerden Bei einer Achalasie sind Schluckbeschwerden (Dysphagie) das Hauptsymptom, da der untere Speiseröhrenschließmuskel nicht richtig entspannt. Gewichtsverlust Die Nahrung gelangt nicht mehr richtig in den Magen. In schweren Fällen kann dies zu Mangelernährung führen. Steckenbleiben von Nahrung Die Nahrung wird nicht in den Magen weitergeleitet und bleibt in der Speiseröhre stecken, was zunächst bei fester Nahrung und später auch bei Flüssigkeiten Probleme bereitet. Brustschmerzen Brustschmerzen werden oft als krampfartig beschrieben und treten nach dem Essen oder Trinken auf. Regurgitation (Hochwürgen) Das Hochwürgen von unverdauter Nahrung und Flüssigkeit ist ein typisches Symptom, das durch den gestörten unteren Speiseröhrenschließmuskel verursacht wird. Weiter

Ärztebroschüre Informationen über die Seltene Erkrankung Achalasie

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. Überregional: Kontakt für Familien mit betroffenen Kindern und Jugendlichen Antje Krieger-Wehnsen a.krieger-wehnsen@achalasie-selbsthilfe.org Regionalgruppe Nord (Schleswig Holstein, Hamburg, Bremen, Niedersachsen) Dorothea Kästner und Giuseppe Sacco regionalgruppe-nord@achalasie-selbsthilfe.org Regionalgruppe Nordost (Brandenburg, Berlin, Mecklenburg-Vorpommern) Bernd Fels, Michaela Krzewina und Johanna Schönig regionalgruppe-nord@achalasie-selbsthilfe.org Regionalgruppe Mitteldeutschland (Sachsen, Sachsen-Anhalt, Thüringen) Dirk Backmann und Steffen Tschernow regionalgruppe-mitteldeutsch@achalasie-selbsthilfe.org Regionalgruppe Nordrhein-Westfalen Daniela Walbelder, Michel Sonntag und Maike Erdmann regionalgruppe-nrw@achalasie-selbsthilfe.org Regionalgruppe Südwest (Rheinland-Pfalz, Hessen, Saarland) Sylvia Heck regionalgruppe-suedwest@achalasie-selbsthilfe.org Regionalgruppe Baden-Württemberg Katharina Christ und Dirk Backmann 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

Recommended behaviour for achalasia sufferers from achalasia sufferers It must be said that this is a collection of experiences from various affected individuals. However, some people find cold water helps, whilst others benefit from warm water. Therefore, please consider these recommendations as suggestions and try them out to discover what helps. Nutrition · Eat several small portions daily, chew thoroughly. · Replace normal food with baby food and infant food when necessary · Do not eat food with long fibres, or cut up very small. · (e.g. sauerkraut, asparagus, leek) · Cooked food is more easily digestible than spicy fried or uncooked vegetables. · When seasoning with pepper, paprika, garlic, curry, chilli, etc., reduce the quantities. Fresh and dried herbs can be used liberally. Just be careful with chives, these adhere to the wall of the oesophagus. · Try fresh fruit, in particular bananas, apples, pears, grapes, cherries, plums; opt for fruit that is low in fruit acid and is soft · Drink plenty of fluids: Tea, still water, apple spritzer and beer are generally well tolerated. · Caution: Supplementary food (high-calorie nutritional supplements) can cause intestinal cramps and diarrhoea · Aniseed and ginger help to prevent nausea. They are also available in form of candies. · All this helps to reduce, eliminate or prevent malnutrition. A balanced diet should primarily include basic (alkaline) and neutral foods. Because you are restricted in your food intake to a greater or lesser degree, you should try to eat a balanced and calorie-conscious diet and avoid acidification of the body. You can achieve this by eating predominantly alkaline and neutral foods. In addition to ensuring balanced acid levels in your body, a balanced diet also contributes to your personal well-being! Base and neutral foods largely balance out the excess acidity that you get from certain foods. Further tips from us · Do not eat for four hours before going to bed · Cola calms the gastrointestinal tract · Keep the torso upright (15-30°) when sleeping · Hobbies induce relaxation · Sport promotes well-being · Do not be a guinea pig What you can try to deal with chest cramps Medication · Centramine / liquid · Nitrospray (during hospitalisation) · Schüssler salts “Hot Seven” - 10 tablets dissolved in hot water · Buscopan spasmolytic suppositories · Tromcardin complex, 2x 1 tbl. · Novaminsulfon oral drops · Magnesium · PPI (Pantoprazole, Omeprazole etc.) · DILTIAZEM AL 60 for severe pain Food · Still water · Drink hot or cold water · White bread · Water with peppermint oil · Real liquorice · Cola · Nettle tea for heartburn · Gruel/porrige · Cold water, cold milk · Banana · Cold quark, yoghurt · Ice · Rusk · Dark chocolate · Manuka honey Miscellaneous · Osteopathy · Trigger massage · Reiki · Hot water bottle · Holistic healing practitioners/homeopathic practicioner · The vibration caused by a purring cat when it is lying on your chest · Take an inflatable (vein) cushion with you when you travel to raise the sleeping position Medical rehabilitation · Rehab after hospitalisation · At the latest 2 weeks after surgery · Hospital welfare service applies for follow-up treatment · Serves to build up nutrition, muscle development and mental stability · Costs are covered by the pension insurance or statutory health insurance · Includes intensive medical and physiotherapeutic treatment Objective · The restoration of physical functions, nutrition, mental stability and social reintegration Recognition as a disability Application to the healthcare agency responsible Joining the Sozialverband Deutschland VdK welfare organisation is expedient Contact: www.vdk.de Tips for coping with achalasia from patients for patients These advices have proved useful. When spasms occur, you could try “Zentramin sprint”. This is a recommendation from an achalasia patient in North Rhine-Westphalia. Nutrition reduce malnutrition eat a good amount of calories eat several small meals per day, chew properly when needed, eat baby food no food with long fibres or cut it into very small pieces (e.g. asparagus, leek, sauerkraut) cooked food is easier to digest than fried one or raw vegetables when spicing the food, take care with pepper of any kind, garlic, curry, chilli etc.. Fresh herbs (or dried) can be used lavishly. Though chives may be a problem as these herbs may stick to the sides of the gullet. try fresh fruit, especially bananas, apples, pears, grapes, cherries and plums. Fruit with less fruit acid is preferable. Do drink enough: tea, still water, apple spritzer (apple juice mixed with water) and bear is usually well tolerated Watch out: high calorie sip feed (food supplement) can cause intestinal spasms and diarrhoea Aniseed and ginger help when suffering from nausea (available as candy) A balanced diet should mostly contain alkaline and neutral food. As you have limitations regarding the intake of food to a greater or lesser extent, it is sensible to try to stick to a balanced diet and to avoid hyperacidity. This is possible by mostly eating alkaline and neutral food. Additional to achieving a good acid-base balance, a balanced diet improves your own personal wellbeing! Alkaline and neutral foodstuffs virtually equalize the excess of acid you obtain from certain kinds of food. You may find examples of such food under “food”. Follow-up treatment Rehab after a stay in hospital 2 weeks after the surgery at the latest In Germany the hospitals’ social services apply for the follow-up treatment It is necessary in order to normalize the food intake, to improve the muscle constitution and to stabilise the psyche. Medical rehabilitation The aim is to restore bodily functions, the function of the organs and the social reintegration. In Germany the pension insurance or the statutory health bear the costs Includes an intensive medical and therapeutic treatment Weitere Themen Ernährung Angehörige & Betroffene Praktische Hinweise zur Ernährung Leben mit Achalasie - Resilienz

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

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

Fragebogen zu favorisierten Behandlungsmethoden der Achalasie Diagnose Achalasie 1. Seit wann ist die Diagnose Achalasie bei Ihnen bekannt? Option wählen 2. Wie lange war der Zeitraum von Beschwerdebeginn bis zur Diagnoseerstellung? Option wählen 3. Nach welchen Vorgehen wurde die Diagnose gestellt? (Mehrfachantworten möglich) * Required Magenspiegelung Röntgenbreischluck Speiseröhrendruckmessung (Manometrie) psychosoziale Faktoren Autoimmunerkrankung genetische Faktoren Eckhard-Score 4. Welche Typ der Achalasie liegt bei Ihnen vor? Option wählen Beratung und Wahl der Behandlungsmethode 5. In welcher Einrichtung wurden Sie über die Behandlungsmöglichkeiten aufgeklärt? Option wählen 6. Wurden Sie über die unterschiedlichen Behandlungsmöglichkeiten aufgeklärt? * Ja Nein 7. Wurden Sie umfassend und ausgewogen über alle Behandlungsmöglichkeiten aufgeklärt? * Ja Nein 8. Welche Behandlungsmethode wurde Ihnen primär empfohlen? Option wählen 9 . Haben Sie den Eindruck, dass der/die aufklärende Arzt/Ärztin eine Behandlungsmethode favorisiert hatte und wenn ja, welche Behandlung? * Ja Nein Welche: Option wählen 9a. Welche Begründung wurde für diese Methode gegeben? 9b. Haben Sie Vergleichsmeinungen eingeholt? Ja Nein 9c. Von wem wurde die Entscheidung getroffen? Option wählen 9d. Würden sie diese Behandlungsmethode nochmal wählen? Ja Nein Gewählte Behandlungsmethode(n) 10. Wie wurden Sie behandelt? (Mehrfachantworten möglich) * Required Medikamente Bougierung Dilatation POEM Operation Psychotherapie 11. In welcher Reihenfolge wurde die Behandlung durchgeführt? (Beispiel: 1. Ballondehnung 2. POEM) Ergebnisse der Behandlung 12. Welche Methode hat am besten geholfen? Option wählen 13. Sind Sie nach Ihrer letzten Behandlung zurzeit beschwerdefrei? * Ja Nein % Besserung welche Behandlung 14. Welche Beschwerden haben Sie zurzeit nach Bougierung? Schluckstörungen Reflux Schmerzen Sonstiges Wie Stark sind die Beschwerden von 0-10? Welche Beschwerden haben Sie zurzeit nach Ballondehnung? Schluckstörungen Reflux Schmerzen Sonstiges Wie Stark sind die Beschwerden von 0-10? Welche Beschwerden haben Sie zurzeit bei POEM? Schluckstörungen Reflux Schmerzen Sonstiges Wie Stark sind die Beschwerden von 0-10? Welche Beschwerden haben Sie zurzeit bei Operation? Schluckstörungen Reflux Schmerzen Sonstiges Wie Stark sind die Beschwerden von 0-10? Nachsorge 15. Erfolgen regelmäßige Nachkontrollen im Rahmen eines Zeitplans? Wenn ja, in welchem Zeitintervall? * Ja Nein Zeitintervall Antworten senden

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

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

Neubetroffene Seite 5 von 9 Therapieoptionen Medikamentös Es gibt Medikamente (z. B. Nitrate, Calciumantagonisten), die kurzfristig helfen können, sind aber oft keine Dauerlösung. Heller-Myotomie Chirurgische Durchtrennung des Schließmuskels (oft mit Reflux-OP). Botulinumtoxin-Injektion Insbesondere bei Risikopatient:innen. POEM Minimalinvasive endoskopische Myotomie. Pneumatische Dilatation: Erweiterung des unteren Schließmuskels. Vergleich Heller Myotomie und Dilatation Welche Option geeignet ist, hängt stark vom individuellen Befund und Gesundheitszustand ab – das wird in der Sprechstunde mit dem Arzt entschieden. Eine gute fundierte Anamnese ist wichtig. Dies sollte im Gespräch vom Arzt auch erfolgen. Eine Zweit-Meinung ist genauso hilfreich und dient der weiteren Orientierung zur Behandlungsfindung. Entscheidungshilfe Weiter