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
c. Frequency of contact with other people
d. Cardiovascular disease
e. Lung disease
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.
YouTube Video von unserer neuen Regionalleiterin NRW Vanessa Kämmerling über unsere Jubiläumsfeier am 27.08.2022
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The 4th edition of the reference publication “Ein Leben mit Achalasie” was published in 2018. New members receive this with the welcome pack.
Current members can order it for the special price of € 25 including postage.
All experts and interested parties can purchase it for the price of € 38.50 including postage.
The book can be ordered from the treasurer Jürgen Hermanns.
Print the attached order form, complete it and email it to firstname.lastname@example.org.
Dispatch takes place after receipt of payment.