Chapter: Consultation hour
Article: 8 of 12
Update: Feb 24, 2021
Author(s): Wohlgemuth, Walter A.
Easily visible and deforming vascular anomalies, in particular, can lead to social and psychological health problems in addition to physical ones, especially if they are also chronically painful.
This is often aggravated by the rarity of the disease, as it makes it difficult for those involved to exchange experiences with each other. This uniqueness is often experienced as loneliness.
In addition, these diseases are chronic and can restrict the activities of daily living in the long term. The very early visibility of a capillary malformation, especially on the face, hands, neck and décolleté, can cause at least subjectively perceived stigmatization at a young age. The same applies to corresponding segmental overgrowth syndromes where a body part may strongly deviate from the norm.
In addition, there are often negative therapeutic experiences from the application of unsuccessful or even harmful therapies. A frequently repeated statement is: “Nothing can be done about it”. The opposite is sometimes stated as well: “We have to amputate, otherwise you could bleed to death”. It is not uncommon for patients to become painfully aware of the fact that there is currently a shortage of interdisciplinary expertise and care in the field of vascular anomalies. This can result in additional uncertainty. The chapter “Patients and relatives” provides a detailed report on this from the patient’s perspective.
These experiences sometimes cause patients to withdraw from social life as well. In these cases, it is a downward spiral that leads to increasing withdrawal with less and less social contact. It also frequently affects whether people enter into partnerships.
At this point it is important to note that this process is not a primary mental or social problem that belongs to the primary clinical picture of vascular anomalies, but it is a typically secondary phenomenon. Thus it is external and may readily be dealt with. Direct brain organic or psychiatric diseases are extremely rare in peripheral vascular anomalies and are not part of the disease. Social withdrawal and, if present, psychological problems are always reactive, secondary responses to coping with the disease and are not primary personality traits or even a primary part of the disease when they occur. Thus, they are regularly treated from a psychological rather than a psychiatric perspective.
As reactive changes, they are psychologically addressable, and thus can be clearly influenced, above all, by the patients themselves. The prognosis is good after appropriate clarification of the root of the problems and their therapy.
Parents should convey to their affected children at an early age that this is an anomaly, i.e., a variant, and should not exempt them from normal social activities (including sports). In terms of psychological reactions, however, this would be misunderstood (over)protectiveness or inappropriate caution, which might lead to a negative body image.
Practically all patients with vascular anomalies can participate in normal social life, and appropriate specific medical or interventional therapy can be offered even for severe vascular defects.
Adequate coping strategies for dealing with the disease must be developed together with the patient and often with relatives and partners as well. Learning about the background of the disease as well as the individual prognosis helps many patients and relatives as an important step in processing disease-related fears about the future.
Many patients also work out good behavioral strategies for themselves and, through contact with other affected people, they should share their individual solutions as well as their worries and problems, which are often not dissimilar to other people’s. Appropriate contacts via patient support groups are particularly valuable in view of the rarity of the disease.
In the case of serious health and psychological problems that make social integration difficult in the long term, treatment and advice at an interdisciplinary center of expertise for vascular anomalies is recommended. Appropriate professional, psychologically trained help is a direct part of the treatment team or can be arranged.
In addition to psychological care, specialist anesthesiology care of a chronic pain syndrome is of particular importance, as this also has a considerable impact on the psychological and social health of a patient.