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

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

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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 Zurück 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 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

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 Roehrenpost 41.pdf

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Tips for nutrition Hier sind die Verhaltensempfehlungen und Tipps für Menschen mit Achalasie, basierend auf den Erfahrungen verschiedener Betroffener: Ernährung: Mehrere kleine Portionen und gründliches Kauen: Statt große Mahlzeiten sollten Betroffene mehrere kleinere Portionen über den Tag verteilt zu sich nehmen. Das gründliche Kauen hilft, die Verdauung zu erleichtern. Baby- und Kindernahrung: Bei Bedarf kann auf leicht verdauliche Baby- und Kindernahrung umgestiegen werden. Vermeidung von langfaserigen Lebensmitteln: Es wird empfohlen, langfaserige Nahrungsmittel wie Sauerkraut, Spargel und Porree zu vermeiden oder diese sehr klein zu schneiden. Gegartes Essen bevorzugen: Gekochte oder gegarte Lebensmittel sind oft besser verdaulich im Vergleich zu scharf angebratenen oder rohen Lebensmitteln. Maßvolles Würzen: Bei der Verwendung von Gewürzen wie Pfeffer, Paprika, Knoblauch, Curry und Chili ist eine niedrigere Dosierung ratsam. Frische Kräuter können reichlich verwendet werden, jedoch sollte bei Schnittlauch Vorsicht geboten sein, da er an der Speiseröhrenwand haften bleiben kann. Frisches Obst ausprobieren: Weiche und wenig säurehaltige Früchte wie Bananen, Äpfel, Birnen, Weintrauben, Kirschen und Pflaumen werden empfohlen. Viel trinken: Tee, stilles Wasser, Apfelschorle und gut verträgliches Bier sind generell gut verträglich. Vorsicht ist geboten bei Zusatztrinknahrung, da diese Darmkrämpfe und Durchfall verursachen kann. Gegen Übelkeit: Anis und Ingwer können bei Übelkeit helfen und sind auch in Bonbonform erhältlich. Weitere Tipps: Vier Stunden vor dem Schlafengehen nichts mehr essen: Eine längere Essenspause vor dem Schlafengehen wird empfohlen. Cola kann den Magen-Darmtrakt beruhigen: Cola kann in manchen Fällen helfen, den Magen-Darmtrakt zu beruhigen. Oberkörper im Bett leicht erhöht lagern: Ein leicht erhöhter Oberkörper (15-30°) im Bett kann helfen, Beschwerden zu lindern. Hobbys und Sport: Hobbys zur Entspannung und regelmäßiger Sport werden empfohlen, um das Wohlbefinden zu fördern. Nicht als Versuchskaninchen agieren: Es wird geraten, vorsichtig bei neuen Therapien oder Experimenten zu sein. Zurück Weitere Themen Tipps für die Seele Empfelung PPI Einnahme

Was soll der Verein leisten? - Was benötige ich von ihm? Wir möchten unsere Aktivitäten und begrenzten Ressourcen möglichst am konkreten Bedarf ausrichten. Das heißt gezielte Informationen verbreiten und keinen unnötigen Aufwand betreiben. Bitte füllen Sie dieses Formular aus und reichen Sie Ihre Antwort ein, Danke. Welche Angebote/Leistungen des Vereins hast Du im Jahr 2020 genutzt? Röhrenpost Website Fachbuch "Leben mit Achalasie" Anfrage an Regioleiter/In Anfrage an den Verein Welchen Wert hat der Achalasie-Selbsthilfe e.V. für Dich? (1- Geringer Wert 10- hoher Wert) 1 2 3 4 5 6 7 8 9 10 Welche Themen sollen auf den nächsten Regionaltreffen behandelt werden? Welchen speziellen Bedarf hast Du? Welche sozialen Medien wünscht Du Dir für die Kommunikation mit dem Verein? Facebook Twitter Instagramm Sonstige Welche Kritik? Welche Verbesserungsvorschläge? Antworten einreichen Vielen Dank!

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

Neubetroffene Seite 8 von 9 Häufige Fragen (FAQ) Ist Achalasie heilbar? Eine Heilung ist aus heutiger Sicht der Medizin nicht möglich. Aber viele Symptome lassen sich durch Therapie sehr gut lindern. Und eine angepasste Ernährung hilft auch schon bis zur Entscheidung einer weiteren Behandlung. Muss ich meinen Lebensstil komplett umstellen? Nicht unbedingt. Mit gezielten Ernährungstipps und der richtigen Therapie können viele Betroffene ein normales Leben führen. Gibt es Risiken oder Komplikationen? Unbehandelt kann es zu Gewichtsverlust, wiederkehrenden Schleimhautentzündungen oder anderen Problemen kommen. Moderne Behandlungen minimieren viele Risiken. Weiter

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