Ehlers-Danlos syndrome, EDS, is a group of hereditary connective tissue disorders. Main characteristics are hypermobility, skin hyperextensibility, lack of energy and tissue fragility. EDS-HT is the hypermobility type. The disorder is known to have an influence on the daily life because of physical restrictions and also on participating roles, on the own emotional wellbeing, on interpersonal and intimate relationships with friends, family and partners. About this topic isn’t much known in evidence based literature.
The intension of this study is to explore the lived experiences with woman with EDS-HT in search of more insight how EDS-HT influences the emotional well-being, interpersonal and intimate relationships.
This a qualitative study where semi-structured interviews were taken by five women with EDS-HT. The persons were selected at a symposium about EDS.
The participants stated that it is more difficult to participate in activities together with friends because of a lack of energy, joint hypermobility and chronic pain. The number of friends reduces, but friends that remain are very valuable. By their family they feel supported or they feel misunderstood. In general, participants say that they often feel misunderstood by their environment. Partners are recognised as a great source of support. Though participants and their partners need to adjust to the situation and the capacities affected by EDS-HT. It is also stated that EDS-HT influences their sexual intercourse. Participants also explained the influence on the choice to have children or not.
Discussion/Conclusion: For these participants, EDS-HT has an important influence in interpersonal and intimate relationships due to physical restrictions which has an influence on their participation in daily life. The group of women was rather small and new diagnostic criteria are published, so it is important that further research in function of client-centeredness is done in order to have a wider and up-to-date perspective