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.