Living with BO – Modules of therapy

Psychologic and Social Services

Patients with chronic or rare conditions face many and often unpredictable obstacles.

At first, a chronic disease causes a huge psychological burden. The uncertainty until a definite diagnosis is found, the stresses in everyday life and – especially in children and adolescents – the problem of being different may cause a big pressure on patients and families.

In addition, a chronic disease takes a lot of time. Countless doctors must be sought, which gives rise to repeatedly waiting times. Countless and possibly unnecessary diagnostic measures must be carried out; exacerbations may lead to hospitalization; experts for a rare disease are often far away.

This often leads to mental and economic problems up to the often unwarranted loss of a job or the breakup of the family.

Therefore, patients need access to trained personnel who can offer help with financial, legal and psychological problems.


In many rare lung diseases as well as in BO, the ventilation and adequate self-cleaning of the lung is altered.  As a consequence the oxygenation of the blood may be disturbed causing headaches, exhaustion and more. Patients suffering from an ongoing weight-loss due to the inflammation (leading to a higher calorie consumption) on the one hand and a loss of appetite (leading to a lower calorie consumption) on the other hand. Regular physiotherapy is therefore essential to clean the mucus from the respiratory tract. The patient will only be able to perform physiotherapy regularly, if the essential skills are personally acquired. The aim of these exercises is to improve lung function and normalize gas exchange. In lung physiotherapy numerous tools are available. These include devices that prevent bronchial collapse during forced exhalation (PEP-systems) or cause a pulsation in the airways (e.g., Flutter, RC Cornet). Other devices like trampolines, exercise bikes, or steppers may all be effective to get rid of the mucus. Further patients have to pay attention to keep the full mobility of the chest, as labored breathing and recurrent episodes of coughing may cause rigidity. This can be treated effectively by massages or Pezzi balls. It is important to emphasize, that this treatment has to begin early. Not only because an effective therapy helps to support lung growth, but also because children can integrate the treatment much easier than young people in their daily routines. While growing older they will be more confident and independent in coping with their disease and will more frequently use the therapeutic options available. The implicitness and the independence are important success factor during puberty.

The respiratory physiotherapy has undergone a tremendous change in the last twenty years. Therefore, it is extremely important to promote the education and training of physiotherapists.

We would like to establish contacts to an apprenticeship training position. Please contact us.


The nutritional status is often closely associated with the severity of a chronic lung disease. The patients have both due to the inflammation, as well as through increased work of breathing (rapid breathing, possibly more power for each breath required) and possibly as a side effect of therapy an increased energy demand. Simultaneously, the appetite is reduced by the inflamed lungs. This makes it difficult to consume the regular calories but almost impossible to compensate for the higher losses. Inadequate weight gain in children may promote recurrent respiratory infections and in the end may lead to a decline in lung function. Thus depending on the nutritional status measures to encourage improvements are discussed.

After a careful history and after synopsis of all findings you might get the recommendation to use snacks in-between meals, have a calorie enriched diet or even “astronaut food”. We believe that dietary counseling is associated with a weight gain and with a gain in quality of life.