Life with Turner's syndrome—a psychosocial report from 22 middle-aged women

Abstract

Life with Turner's syndrome-a psychosocial report from 22 middle-aged women. Acta Endocrinol 1993:129:188-94. ISSN 0001-5598 Twenty-two middle-aged women (median age 44.5 years) with Turner's syndrome were interviewed about family background, social identity, emotional development, relations, female identity, sexuality and reactions to the diagnosis, to evaluate how the condition has affected their lives and coping style. During the years preceding the diagnosis and hormonal replacement therapy (HRT) they had often isolated themselves as they felt different from their peers. Ovarian failure and infertility, not the body height, were the major problems for most of the women. Infertility had affected the women very deeply and many felt depressed because of this. Adolescent behaviour, a feeling of chronic inferiority or a feeling of grief were different ways of coping with the situation. Median age at sexual debut was 19.5 years. Painful intercourse related to vaginal constriction and sore membranes was commonly reported. Most of the women had stopped HRT because of side-effects. Many of the problems experienced by the women could have been avoided if proper HRT had been administered in due time and on a long-term basis. This emphasizes the importance of regular contact with a gynecologist of special training and interest.

Turner syndrome: Four challenges across the lifespan

“…Also mentioned was how their diagnosis later interfered with dating, as some women were hesitant to enter into relationships out of fear of being rejected once their partners learned of their inability to reproduce. These findings are supported by Sylvén and colleagues' research study of 22 middle-aged women with TS, which revealed infertility as the most difficult and distressing consequence of their condition and acknowledged similar sentiments surrounding infertility and intimate relationships [Sylven et al 1993]. Given the lifelong sadness associated with infertility, creating a family environment that does not define a woman or a woman's successes by her ability to bear biological children could help girls and women with TS view themselves beyond their reproductive capacities.…”

“…Physical features associated with a TS karyotype may include: ovarian failure with associated infertility, short stature, cardiovascular and renal malformations, hypertension, diabetes, hearing loss, skeletal abnormalities and neck webbing [Lippe 1991;Sybert 2001;Cunniff 2002;Elsheikh et al 2002]. Girls and women with TS generally have a normal range of cognitive abilities but may have learning difficulties, particularly related to nonverbal skills such as visual-spatial abilities, motor coordination, and mathematics [Skuse 1987;Sylven et al 1993;Saenger 1996;Lagrou et al 1998;van Borsel et al 1999;McCauley et al 2001;Ross 2001;Sybert 2001;Elsheikh et al 2002;Frias and Davenport, 2003].…”

“…A number of studies on Turner syndrome provide recommendations to health care providers on how to improve the overall physical and psychological health of girls and women with TS [Rieser 1992;Sylven et al 1993;Saenger 1996;Rosenfeld 2000;Savendahl and Davenport 2000;Elsheikh et al 2002;Frias and Davenport 2003]. Published timelines for administering various tests and explanations of symptoms and complications of TS serve as references for health care providers [Sylven et al 1993;Saenger 1996;Savendahl and Davenport 2000;Ross 2001;Sas and de Muinck Keizer-Schrama 2001;Cunniff 2002;Elsheikh et al 2002;Frias and Davenport 2003].…”

“…Published timelines for administering various tests and explanations of symptoms and complications of TS serve as references for health care providers [Sylven et al 1993;Saenger 1996;Savendahl and Davenport 2000;Ross 2001;Sas and de Muinck Keizer-Schrama 2001;Cunniff 2002;Elsheikh et al 2002;Frias and Davenport 2003]. Although general information addressing future health concerns of women with TS exists, such as osteoporosis, hearing loss, and cardiovascular disease, the majority of women with TS are not monitored adequately for these late-onset diseases and conditions [Ross 2001;Elsheikh et al 2002].…”

“…Consequently, less is understood about the overall morbidity and mortality of women with TS and many women are left with unanswered questions about their future [Sybert 2001]. In addition to the relative lack of research into the consequences of TS on affected adults, few studies present the challenges associated with TS and areas of needed improvement in health care as articulated by girls and women living with the condition [Sylven et al 1993]. …”