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  • Members’ access | Achalasie

    Willkommen im Mitgliederbereich Newsletter Röhrenpost Protokolle MV und Regiotreff Kliniklisten Anerkennung Schwerbehinderung Studien Empfehlung PPI Einnahme Satzung Informationen

  • Information for mildly affected individu | Achalasie

    Information for sufferers with a mild form of achalasia and for those in the early stages of the disease This article is intended to address individuals who are suspected of having achalasia or who are dealing with difficulties that are typical of the early stages of the disease. Likewise those who are affected by a milder form of the disease and who therefore have their own personal questions. Achalasia does not begin with a sudden and unambiguous event, but usually develops gradually over the course of weeks, months or even years. Sometimes other simultaneous health events, occupational and family strains, etc., can be registered as suspected triggers. A long time often passes from the moment the swallowing disorder is personally perceived to the point of diagnosis. During this phase of uncertainty, some individuals attempt to repress the symptoms, make various assumptions, try to make changes to their eating and drinking habits, observe and change some aspects of everyday life, communicate with relatives, with professionals and much more besides. With a bit of luck, the doctor’s consultation quickly leads to a clear diagnosis, although sometimes also to misdiagnosis and incorrect treatment. In addition to the treatment recommendations from a specialist, personal body awareness is always the focus of a new life experience. It is very difficult to realistically assess the effects that this rare disease has on oneself, because there are - strictly speaking - many different forms. As a natural consequence, many sufferers experience a mixture of emotions, which can vary greatly in composition: Worry about the unknown limitations, fear of painful treatment, fear of aggravation, concern about existence, concern about a reduction in the quality of life - but also positive attitudes, optimism regarding improvement, resilience, confidence in appropriate help, confidence in support within the family, hope for improved healthcare and hope that things will not actually be that bad after all. Depending on their life situation and personality, each individual is required to deal with their own personal feelings and emotions. Some individuals are able to compensate for minor swallowing disorders with their own tricks and personally devised methods, and somehow live with them. Those who inform themselves about the clinical picture and the typical progression of the disease will come across a widely diverse range of views and representations. Many hospitals report on achalasia and describe their diagnostic and therapeutic possibilities. Research shows that hospitals apply a variety of different strategies. However, in general only the three most important types of achalasia are mentioned according to the Chicago Classification. The serious progressions of achalasia are then described, where clinical help is indeed essential. Milder progressions of the disease are not classified and described or differentiated anywhere. Furthermore, clinical studies do not make any assertions regarding the ratio of mild to moderate and severe disease progressions. As an affected individual, you may also be concerned that information on the internet could be influenced by specific interests (e.g. economic factors). Even leading members of Achalasie-Selbsthilfe only have a limited perspective of the ratio of mild to severe disease progression: Those who are able to cope with minor limitations caused by the disease usually do not contact the Achalasie-Selbsthilfe (it would be nice if they did...). Nonetheless, Achalasie-Selbsthilfe has accumulated knowledge gained from many years of experience. Every member is able to recall the time when the disease first appeared and is also happy to pass on this experience to new sufferers who submit inquiries via the website. The needs of sufferers of achalasia in its early stages, during the diagnosis phase and the search for suitable treatment for mild forms of the disease are addressed in the following. 1. The confusion that comes with unclear and indefinable symptoms can be countered by open communication with relatives and medical professionals. Although it may appear preferable to keep some embarrassing situations hidden away (e.g. from colleagues), openness is the best strategy. Few people possess knowledge of rare diseases, but finding someone with experience is still helpful. At the same time, everyone learns to describe their complaints in a more differentiated way. 2. A comparison with other disease courses involving swallowing disorders can lead to an approximate diagnosis. Looking at therapeutic methods is frequently unhelpful, and likewise the presumption of psychosomatic causes is of little use. 3. The inevitably arising fears and apprehensions form part of the reality. Understanding dialogue partners are helpful here. The information gathering steps that lead to possible diagnoses and prognoses provide further assurance. 4. The individual’s own personality is greatly influential during this orientation phase. Some individuals become a whirlwind of activity, searching intensively and almost desperately for every available opinion, to avoid making the wrong decision. The contrasting approach of others is to remain still and wait, in the hope that they will become confident of the right decision. Each individual can and should be allowed to develop his or her own very personal attitude when it comes to proximity and distance to the illness. 5. Little knowledge exists regarding the possible consequences of not treating mild achalasia. 6. Often, as the narrowing of the stomach entrance becomes more pronounced, there is a need for dilatation. It is not possible to definitively identify the right moment for this procedure on the basis of a gastroscopy. Furthermore, a barium swallow does not provide clear findings for the right moment either. Instead, it is the patient's subjective feeling that the impaired transport of the food bolus and the associated pain have become unbearable that gastroenterologists also rely on. 7. Some of the newly afflicted persons wish to avoid the treatment offered by the visceral medicine in hospitals, if possible and initially seek naturopathy therapies. Some good outcomes have been experienced with osteopathy and relaxation techniques. Trying these out can be worthwhile. Unfortunately, no systematic evaluations currently exist regarding proof of efficacy that are meaningful for achalasia. 8. Furthermore, there are unfortunately no targeted studies regarding the long-term progression of achalasia. No systematic research has been conducted to determine whether the dynamics of the oesophagus or the behaviour of surgical scars change with age. 9. Achalasia is considered a benign disease. However, medical experts primarily describe the treatment options for more severe courses of the disease. Only isolated personal reports of positive courses of the disease exist, where the constriction has regressed or come to a tolerable stop. It is however likely that there are some individuals, who are able to live quite well with a minor form of the disease. An unknown number of achalasia patients also exists, who can lead a reasonably normal life after one or more dilatations and do not require surgery. 10. As only insufficient epidemiological evaluations are carried out for rare diseases such as achalasia, many questions remain unanswered, in particular for those newly affected. Currently, the Achalasie Selbsthilfe e.V. is distinguishing itself by the introduction of empirical questionnaires. In addition, information from the sharing of experiences at regional meetings is evaluated. This creates a large pool of helpful data. It would be extremely useful if reports of experiences with healing progressions, also courses with minor problems, and inventive interventions could be sent to the association which then could subsequently be made available to all those seekking such information. We hereby kindly request that such reports be sent to us. Anonymity is guaranteed. This will hopefully help to close the existing information gaps described. Weitere Themen Tipps für die Seele Leben mit Achalasie - Resilienz Ernährung Praktische Hinweise zur Ernährung

  • Tips for the soul | Achalasie

    Tips for the wellbeing of your soul First of all, it is important that you have an exact diagnosis and that other diseases have been excluded. Even if achalasia cannot be cured, there are remedies for most of the achalasia-related problems. It is very important that you finally accept the disease. Though it cannot be cured, there are various possibilities to alleviate the symptoms! Perhaps you suffer from the fact that you are incurably ill or you may have the impression that your performance is very limited. Coughing spasms at night have an effect on your sleeping pattern and you may feel exhausted in the morning. Or perhaps you struggle with the question why it had to happen to you. Next to the physical symptoms that are a burden, you struggle with fate. Are you afraid that you might starve, because you can’t eat properly anymore? Do you observe with great unease that you continue to lose weight? Do you feel best not having to drink or eat? Do you avoid drinking or eating in the presence of other people? How can you cope with this? It isn’t possible to just ignore the disease. You rather have to achieve living with it. To accept that it now somehow belongs to you and will not leave you anymore. We know that this is better said than done – but we would like to help you achieving it. Care for yourself! Eat small high-calorie meals – not three times, but perhaps six times a day. This requires a much higher amount of time than your meals have taken up before. Be self-confident: it is now normal that you have to eat slowly and several times per day. Take your time and don’t let others rush you! Don’t be economic with calories, be “lavish”: take real good butter on your sandwich, full-fat cream cheese, cream in the soup.... You do not necessarily have to resort to synthetic high-calorie food! “Bottled food” doesn’t feel good; it is not a “normal” nutrition! Normal nutrition is part of a high quality of life. You do not starve. Try to become more balanced! Many patients with achalasia mention that the more balanced and relaxed they are, the less burdensome they perceive their swallowing problems. Think about whether it might be possible for you to reduce stressful situations. Try to identify the situations which are particularly stressful for you – you might be able to prevent them! Is it really necessary to do all the shopping, the ironing, the cooking for the entire family and to make several phone calls, to drive to the car wash, to repair the broken shelf…. and all this after your normal working day? Let others help you and do not hesitate to distribute the work within the family. Take time for your hobby, if you feel that this is relaxing and be happy, when the sun is shining! Don’t get upset easily any more. There are things that are really important. The things you are used to getting upset about are, for the most, probably not. Be economic with your strength! Be self-confident! When you eat in a restaurant, ask for a smaller portion or a kids menu. Don’t discuss – you may leave, if they don’t meet your special request! Do not worry, live! This is possible – even with achalasia. Think positive! Unfortunately, no case has been reported so far where the destroyed nerve cells repaired themselves. It is largely in your hand, though, that your subjective feeling perceives the disease less burdensome. And thus, you might feel a slight improvement only by coping better with your disease. Do not hesitate to ask for professional help, if you feel that you cannot cope on your own!

  • Diagnosis and treatment | Achalasie

    Diagnosis and Treatment Diagnostic Methods thorough evaluation of the disease (diagnosis) barium swallow (gastro-intestinal-passage) gastroscopy/endoscopy manometry (pressure monitoring within the gullet) ph (acid) monitoring within the gullet isotope analysis (scintigraphy) of the gullet computer tomography CT Therapy The treatment of achalasia cannot solve the actual cause. Following therapies can be applied to treat the symptoms: botulinum toxin injections into the muscle of the lower oesophagus sphincter by using an endoscope endoscopic dilatation of the lower oesophagus sphincter surgery of the lower oesophagus sphincter (key-hole or open surgery) medication of accessory symptoms like the inflammation of the gullet, heartburn, cardiac arrhythmia (irregular heartbeat), indigestion there is not yet much experience with alternative medicine. Weitere Themen Schmerzmedikation Infoblatt Vergleich zwischen Myotomie und Dilatation

  • Passwort vergessen | Achalasie

    Passwort vergessen Wenn Sie Ihr Passwort vergessen haben können Sie hiermit ein neues Passwort erhalten. Bitte füllen Sie das Formular vollständig aus. Vorname Nachname Email Senden Ihre Anfrage wurde versendet

  • Specialist literature | Achalasie

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

  • Individuals affected abroad | Achalasie

    Individuals affected abroad ​ Belgium erik.kiekens@skynet.be Denmark abildgaardpia@live.dk Conversation in Danish and English Nederlands t.duber@chello.nl Austria mtodt@achalasie.com Switzerland orientalischer_tanz_iris@sunrise.ch Spain lydia.helms@hotmail.com USA dourebdancar@yahoo.com ​ Great Britain Achalasia Action/Achalasia Meetup Group amandaladell@yahoo.co.uk ​ ​

  • Neue Seite | Achalasie

    Fragebogen der Achalasie-Selbsthilfe e.V. Deutschland Die Auswertung erfolgt anonym 1. Zur Person: PLZ Wohnort Land / Bundesland Geschlecht weiblich männlich divers Alter < 20 Jahre 20 - 30 Jahre 30 - 40 Jahre 40 - 50 Jahre > 50 Jahre Alter beim Auftreten der ersten Symtome der Erkrankung < 20 Jahre 20 - 30 Jahre 30 - 40 Jahre 40 - 50 Jahre > 50 Jahre Das war im Jahr Vermutete Ursachen bzw. Auslöser (z.B. Stress, Partnerschaftsprobleme, andere Erkrankungen) 2. Unter welchen Symtomen litten Sie vor der ersten Behandlung? Schluckbeschwerden (Dysphage) Brustschmerzen (retrosternaler Schmerz) Übelkeit Erbrechen Übertritt von Speisebrei in die Luströhre (Aspiration), nächtlicher I- Sodbrennen (Reflux) Speiseröhrenentzündung Pilzbefall der Speiseröhre Herzrhythmusstörungen Depression Angst Erschöpfung Gewichtsverlust weitere Antworten einreichen Vielen Dank!

  • Angehörige und Betroffene- zwei Blickwin | Achalasie

    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.

  • Form | Achalasie

    Fragebogen Was soll der Verein leisten Der gleiche Fragebogen als HTML Formular ​ Empirische Studie der Achalasie-Selbsthilfe e.V. Deutschland

  • What is achalasia? | Achalasie

    What is 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. What is achalasia of the gullet? In general, this describes the inability of the lower gullet sphincter (oesophagus sphincter or cardia) to sufficiently open for a lump of food to pass into the stomach. In addition to that the motility (peristalsis) of the entire gullet can be negatively affected. Causes and consequences of achalasia - dysphagia - malfunctioning peristaltic of the gullet - malfunctioning relaxation reflex of the lower oesophageal sphincter - malfunction of the upper oesophageal sphincter Sure facts At the cardia the nerve cells (neurons and ganglia) in the plexus (myenteric plexus/Auerbach’s plexus) are degenerated. This causes a tension of the lower gullet sphincter. ​ Swallowing difficulties due to: Impaired mobility (peristalsis) of the oesophagus Impaired swallowing-induced slackening of the lower oesophagus Impaired function of the upper oesophageal sphincter Why? For this question, merely hypotheses can be formulated: autoimmune disorder degeneration and decay of cells, tissues and organs inheritance infection (viral) Symptoms spasmodic pain in the chest difficulties to swallow - with food getting stuck in the gullet regurgitation of undigested food from the gullet digestion problems e.g. bloating weight loss up to 20 kilos malnutrition cough attacks at night due to food reflux Das Leben mit Achalasie YouTube Video von Nicole Büsching im Interview mit unserer Regionalleiterin NRW Vanessa Kämmerling über das Leben mit Achalasie. Weitere Themen Diagnose & Behandlung Infos für leicht Betroffene Entscheidungshilfen zur Achalasie Behandlung Ernährung Achalasie im Kindesalter Verhaltensempfehlung

  • 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 ​

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