The influence of the Ehlers Danlos Syndrome, Hypermobility Type, on motherhood: a phenomenological, hermeneutical study

Background: The consequences of the Ehlers-Danlos Syndrome affect many aspect of daily life. “Living with limitations" is a central theme in their life. The aim of present study is to explore the experiences of women in... [ view full abstract ]

Background:
The consequences of the Ehlers-Danlos Syndrome affect many aspect of daily life. “Living with limitations" is a central theme in their life. The aim of present study is to explore the experiences of women in becoming a mother.

Method:
A phenomenological-hermeneutical study, using in-depth interviews. Cases were selected by a purposive sampling strategy.

Results:
This study showed that the EDS-HT syndrome affects daily life. The data analysis resulted in six themes. (1) The impact of the diagnosis is perceived as relieving in becoming and in being a mother; (2) EDS-HT influences emotions, causes a physical burden and has a major impact on social behavior; (3) Restructuring activities in daily life; (4) Children’s and mothers’ expectations do not correspond; (5) Support of the environment is of major importance; (6) The strength of the child reduces the feeling of illness.

Conclusion:
The diagnosis of EDS-HT is a catalysing factor in the choice of whether to become a mother. EDS-HT has a huge impact, which on his turn influences activities.

Implications:
Health care professionals can be of great importance to help patients in organizing their lives according to the available energy, in supporting their choices. The role of a ‘coach’ gains importance.