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.

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

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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

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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.

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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. Regionalgruppe Nord Dorothea Kästner und Giuseppe Sacco regionalgruppe-nord@achalasie-selbsthilfe.org Regionalgruppe Nordost Bernd Fels und Michaela Krzewina regionalgruppe-nord@achalasie-selbsthilfe.org Regionalgruppe Mitteldeutschland Dirk Backmann und Steffen Tschernow regionalgruppe-mitteldeutsch@achalasie-selbsthilfe.org Regionalgruppe Nordrhein-Westfalen Vanessa Kämmerling und Antje Krieger-Wehnsen regionalgruppe-nrw@achalasie-selbsthilfe.org Regionalgruppe Südwest Silke Zuschlag und Sylvia Heck regionalgruppe-suedwest@achalasie-selbsthilfe.org Regionalgruppe Baden-Württemberg Andreas Woge 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

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