The impact of menstrual disorders on quality of life in women with inherited bleeding disorders

AbstractPhysical activity provides many benefits in patients with congenital bleeding disorders. Patients with hemophilia are encouraged to participate in exercise and sports, especially those patients receiving prophylaxis. Several publications and guidelines have explored this issue in hemophilia patients, evaluating in particular the impact of physical activity on patients' well-being and quality of life. The other rare congenital bleeding disorders are less studied; they are heterogeneous in terms of clinical bleeding phenotype, incidence of hemarthrosis, and arthropathy. Furthermore, prophylaxis in these patients is less common than in hemophilia patients, which must be considered when choosing the type of physical and sporting activity. In this review, the authors have analyzed the literature focusing their attention on those rare coagulation disorders that may be complicated by arthropathy and the role of exercise and sports in this context.

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Everyday issues in women with bleeding disorders

The Journal of Haemophilia Practice ◽

10.17225/jhp00144 ◽

2019 ◽

Vol 6 (2) ◽

pp. 44-49

Author(s):

Naja Skouw-Rasmussen ◽

Debra Pollard

Keyword(s):

Quality Of Life ◽

Life Quality ◽

Psychosocial Health ◽

Bleeding Disorders ◽

Access To Treatment ◽

Building Relationships ◽

Delay In Diagnosis ◽

The Impact ◽

Quality Of Life Instruments

Abstract Men and women with bleeding disorders have similar symptoms but their experiences are different. It has been shown that women with a bleeding disorder rate their quality of life on a par with that of men with haemophilia who have HIV. Many factors determine quality of life, ranging from delay in diagnosis, to access to treatment and support from family and friends. Women should ask themselves what is important to them and recognise the barriers that determine whether they can achieve their aims in life. Quality of life instruments do not measure the impact of these disorders in a way that is specific to women. Psychosocial health – i.e. the mental, emotional, social, and spiritual aspects of what it means to be healthy – can have a major impact on quality of life. Women with bleeding disorders face a number of challenges to their psychosocial health. They struggle to be believed, they live with guilt, and they may have to fight for the best care for their children. They face obstacles to building relationships and their experiences can leave them isolated. Perhaps because of this, women with bleeding disorders are strong – but they also need to be encouraged to make time for themselves and look after their mental health.

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Self-Compassion and Quality of Life in Adults Who Stutter

American Journal of Speech-Language Pathology ◽

10.1044/2020_ajslp-20-00055 ◽

2020 ◽

Vol 29 (4) ◽

pp. 2097-2108

Author(s):

Robyn L. Croft ◽

Courtney T. Byrd

Keyword(s):

Quality Of Life ◽

Social Connectedness ◽

The Self ◽

Future Research ◽

Self Compassion ◽

Adults Who Stutter ◽

And Gender ◽

Relationship Of ◽

The Impact

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.

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