Abstract
Congenital hypogonadotropic hypogonadism/Kallmann syndrome (CHH/KS) is a rare, treatable form of infertility. Like other rare disease patients, individuals with CHH/KS frequently experience feelings of isolation, shame, and alienation. Unlike many rare diseases, CHH/KS is not life threatening and effective treatments are available. Nevertheless, it remains a profoundly life-altering condition with psychosocial distress on a par with untreatable or life-limiting disease. Patients with CHH/KS frequently express lasting adverse psychological, emotional, social, and psychosexual effects resulting from disrupted puberty. They also frequently experience a “diagnostic odyssey,” characterized by distressing and convoluted medical referral pathways, lack-of-information, misinformation, and sometimes-incorrect diagnoses. Unnecessary delays in diagnosis and treatment-initiation can significantly contribute to poor body image and self-esteem. Such experiences can erode confidence and trust in medical professionals as well as undermine long-term adherence to treatment–with negative sequelae on health and wellbeing. This review provides a summary of the psychological aspects of CHH/KS and outlines an approach to comprehensive care that spans medical management as well as appropriate attention, care and referrals to peer-to-peer support and mental health services to ameliorate the psychological aspects of CHH/KS.
Highlights
Congenital hypogonadotropic hypogonadism (CHH) is a rare genetic endocrine disorder causes by the insufficient secretion or action of gonadotropin-releasing hormone (GnRH)
Box 2 | Red flags pointing to Congenital hypogonadotropic hypogonadism/Kallmann syndrome (CHH/Kallmann syndrome (KS)) diagnosis
This point is relevant because breast size and appearance can be a source of significant anxiety and may impair body image for many eugonadal women–let alone those women with CHH/KS
Summary
Reviewed by: Ludwig Wildt, Innsbruck Medical University, Austria Himanshu Arora, University of Miami, United States. CHH/KS is not life threatening and effective treatments are available. Patients with CHH/KS frequently express lasting adverse psychological, emotional, social, and psychosexual effects resulting from disrupted puberty. They frequently experience a “diagnostic odyssey,” characterized by distressing and convoluted medical referral pathways, lack-of-information, misinformation, and sometimes-incorrect diagnoses. Unnecessary delays in diagnosis and treatment-initiation can significantly contribute to poor body image and self-esteem. Such experiences can erode confidence and trust in medical professionals as well as undermine long-term adherence to treatment–with negative sequelae on health and wellbeing.
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