Patients and relatives

Chapter: Patients and relatives
Article: 1 of 7
Update: Mar 11, 2021
Author(s): Bundesverband Angeborene Gefäßfehlbildungen e.V.

This chapter deals with an important aspect in the assessment and treatment of vascular anomalies, namely the experience of the patients and relatives themselves. Here, those affected and their relatives have their say.

What does it mean to have a congenital vascular malformation?

The individual experience of a patient or family members is often clearly different from the experience of the physician. Therefore, in order to provide a comprehensive overview of the relevant facets, it is essential to include both aspects.

Medical professionals may find the experiences presented here a worthwhile addition to their viewpoint, and patients and families may find them helpful in recalling their own experiences. Added to this, there is a short compilation of problem areas.

The following results of a survey among affected people show: there are subjective individual experiences and there are experiences that many patients and relatives have in common.

It is obvious that physical, psychological and social well-being is not only influenced by the individual, but also by social backgrounds.

What does the diagnosis “vascular anomaly” mean for affected people and their relatives? As well as covering all the scientific aspects, helping this group is a key concern of the Compendium Vascular Anomalies. In this chapter, patients report on how they deal with this rare diagnosis and their positive and negative experiences.

This article is provided by the “Bundesverband Angeborene Gefäßfehlbildungen e.V.”, the largest German patient support group for those who are affected of vascular anomalies. Therefore, as far as questions of the medical system/infrastructure are involved, the chapter refers to the specific situation in Germany and experiences of German patients. Knowing that this may be completely different in other countries, we think that some problems are very similar to all people around the world that are affected by an orphan disease, specifically a vascular anomaly.

The shoes of a young patient with different leg lengths. An impressive and very personal review of the last few years. Thanks to good therapy and surgery, the balance is now almost achieved. © Bundesverband Angeborene Gefäßanomalien e.V.

Compendium Vascular Anomalies

Find scientific articles and clinical cases on vascular malformations and vascular tumors

Patients and relatives

What does it mean to have a congenital vascular malformation?

More articles in chapter “Patients and relatives”