Abstract
(1) Background: Ehlers–Danlos syndrome is a heterogeneous group of connective tissue disorders causing pain, fatigue, and disabilities; it has several implications for patients who suffer from this disease. The major clinical manifestations of EDS include joint hypermobility, skin hyperextensibility, and generalized connective tissue fragility. This research aims to explore their perceptions and experiences about the phycological and social spheres. (2) Methods: Semistructured interviews were carried out. Participants were encouraged to talk about issues related to their disease by asking open-ended questions in one to one interview. The interview guide included questions to identify the syndrome’s influence on the social and psychological life of patients All interviews were audio recorded, fully transcribed, and analyzed using the phenomenological theoretical framework. The method of analysis was the thematic interpreting of perspectives and approaches. (3) Results: 31 individuals were proposed to participate in this study. Five patients refused to participate, so a total of 26 interviews were performed. Six themes ((1) Pain and its consequences on a daily basis; (2) The need to name the problem: the diagnosis; (3) Restructuring leisure and social relationships; (4) Limitations due to economic conditions; (5) Psychological impact of the disease situation; (6) Professional limitations) and four subthemes ((1) The value of partner support; (2) The weather influence on social plans; (3) Physical exercise and illness; (4) Support groups) emerged from the data. (4) Conclusions: This study revealed the impact of the syndrome on the social and daily life of patients, and not only in a physical level, but also in a psychological and social approach. These findings allow healthcare providers to know more about this disease in order to support and give advice to patients about the changes they will have to make.
Highlights
Ehlers–Danlos syndrome (EDS) is a heritable disorder of connective tissue with a prevalence of 1:5000 and 1:20,000 around the world, being more frequent in females, who represent 90% of all cases [1,2]. symptoms arise at childhood, they become more severe in adulthood
The major clinical manifestations of EDS include joint hypermobility, skin hyperextensibility, and generalized connective tissue fragility [3,4]. Their main clinical manifestations are related to multiple body systems expressing complex and diverse symptoms, being chronic pain and fatigue the most frequent ones [1] similar to symptoms present in other connective tissue disorders, which makes the specific diagnosis difficult [5]
The study adhered to the COREQ (COnsolidated criteria for REporting Qualitative research); a 32-item checklist using in qualitative studies [11]
Summary
Ehlers–Danlos syndrome (EDS) is a heritable disorder of connective tissue with a prevalence of 1:5000 and 1:20,000 around the world, being more frequent in females, who represent 90% of all cases [1,2]. symptoms arise at childhood, they become more severe in adulthood. Ehlers–Danlos syndrome (EDS) is a heritable disorder of connective tissue with a prevalence of 1:5000 and 1:20,000 around the world, being more frequent in females, who represent 90% of all cases [1,2]. The major clinical manifestations of EDS include joint hypermobility, skin hyperextensibility, and generalized connective tissue fragility [3,4]. Their main clinical manifestations are related to multiple body systems expressing complex and diverse symptoms, being chronic pain and fatigue the most frequent ones [1] similar to symptoms present in other connective tissue disorders, which makes the specific diagnosis difficult [5]. Public Health 2020, 17, 6425; doi:10.3390/ijerph17176425 www.mdpi.com/journal/ijerph
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