Among individuals with Ehlers-Danlos syndrome symptoms of probable anxiety and depression were commonly reported as were tiredness and back pain. The estimation of anxiety was three times higher than that of depression. Tiredness and age were measured factors that were independently and significantly associated with anxiety in the EDS group. In addition, the EDS individuals perceived their physical and mental health much lower than a Swedish population group as measured with SF-36.

The findings in this study significantly indicate the perceived lower health-related quality of life in Swedish individuals with EDS as compared with a Swedish population group [12]. Different authors [6,8] have reported that fears and anxiety are related to hypermobility of joints. Findings that have hypermobile joints in focus are interesting since many in the EDS group suffer from the problems that hypermobility causes and strive to find the reason for their health problems. Often these difficulties are neglected by health care due to lack of knowledge of the consequences of hypermobile joints [10].

Women with EDS in the present study reported poorer health-related quality of life than men. This may be related to that women with EDS as well report more subjective health complaints than men with EDS do [4]. In literature, tiredness or fatigue is observed as occurring with pain, unrefreshing sleep and affective symptoms, which may imply a connection between the underlying mechanisms [15]. That women in general report more symptoms than men was also found in a study by Loge and Kaasa [16] in Norway.

This study confirms earlier results that individuals with EDS perceive a lower health-related quality of life than the population. This can be related to different aspects, of which one might be food hypersensitivity, with indigestion, itching and diarrhea as common problems [17]. Individuals with EDS also report probable anxiety and depression. Future research is encouraged to further explore factors behind this and what initiatives can be taken to find treatments to alleviate the situation for this group is stressed.

Limitations

The major limitation in this study is that data are self-reported due to that the respondents live in all parts of the country. To independently confirm the diagnosis of each person is therefore impossible, however, in the background form a statement was made by each respondent about having received the diagnosis by a physician.

In addition, background variables were not compared to that of the population group,

Clinical implications

Since probable anxiety and depression and lower health-related quality was found in the present study in this group of individuals with EDS, some implications for health-care can be expected. Individuals in this group may need more personal initiatives from health-care in order to be able to manage daily life. Some suggestions can be to learn about the daily consequences of EDS and to acknowledge the physical and psychosocial differences. It is imperative to be aware of that this is a lifelong, genetic disease with no current treatment needs an individual patient approach.