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!

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!

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

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!

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