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

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

Ärztebroschüre Informationen über die Seltene Erkrankung 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

Achalasie-Selbsthilfe e.V. Selbsthilfeorganisation für Speiseröhrenerkrankungen Erfahrungskompetenz trifft Engagement ! HILFE VOR ORT - BUNDESWEIT AKTIV - INTERNATIONAL VERNETZT Neubetroffen Weitere Infos Anker 1 Anker 2 Anker 3 Objective 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. 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. Knowledge gained through experience Recommended behaviour for achalasia sufferers from achalasia sufferers Anker 4 contact Get in touch Die Regionalleiter sind Ansprechpartner für fachliche Themen und geben Auskunft über die Versorgungslandschaft und Kliniken. Sie geben auch Entscheidungsunterstützung. Der persönliche Austausch steht im Fokus der Regionaltreffen. Überregional: Kontakt für Familien mit betroffenen Kindern und Jugendlichen Antje Krieger-Wehnsen a.krieger-wehnsen @achalasie-selbsthilfe.org Regionalgruppen: Nordrhein-Westfalen regionalgruppe-nrw@achalasie-selbsthilfe.org Daniela Walbelder, Michel Sonntag und Maike Erdmann Südwest regionalgruppe-suedwest@achalasie-selbsthilfe.org (Rheinland-Pfalz, Hessen, Saarland) Sylvia Heck Baden-Württemberg regionalgruppe-bawue@achalasie-selbsthilfe.org Katharina Christ und Dirk Backmann Bayern regionalgruppe-bayern@achalasie-selbsthilfe.org Dr. Claudia Haug und Silke Gubo Mitteldeutschland regionalgruppe-mitteldeutsch@achalasie-selbsthilfe.org (Sachsen, Sachsen-Anhalt, Thüringen) Dirk Backmann und Steffen Tschernow Nordost regionalgruppe-nordost@achalasie-selbsthilfe.org (Brandenburg, Berlin, Mecklenburg-Vorpommern) Bernd Fels, Michaela Krzewina und Johanna Schönig Nord regionalgruppe-nord@achalasie-selbsthilfe.org (Schleswig Holstein, Hamburg, Bremen, Niedersachsen) Dorothea Kästner und Giuseppe Sacco Please use this field if you have any questions regarding membership administration or for general communications to the organisation. Ihre Angaben wurden erfolgreich versandt. Send Knowledge gained through experience

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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

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 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

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