Its your hormones.

1
Its your hormones. A qualitative exploration
of mens experiences of Klinefelters
syndrome Marianne Morris, Sue Jackson Judith
Hancock (University of the West of England,
Bristol)

• Background
• Klinefelters Syndrome (KS) is a genetic
  condition affecting men. It has the potential to
• severely reduce testosterone levels
• affect physical appearance and sexual
  development and function
• affect learning and educational development
• Research suggests individuals who are visibly
  different are likely to be affected by their
  appearance. This can be associated with
• increased social stigma
• increased psychological morbidity which can
• undermine a fragile self esteem
• increase the risk of social isolation
• result in psychological distress
• Aim This study explored the experiences of and
  consequence for men living with a diagnosis of KS.

• Method
• Qualitative design utilising data from
  semi-structured interviews
• One-to-one (n8)
• Focus group (n6)
• Via email (n4)
• Interviews recorded and transcribed verbatim
• Responses to open-ended questions in KSA impact
  survey were also analysed (n62)
• Data was analysed using Inductive Thematic
  Analysis

Results The analysis identified two major themes
diagnosis and who am I?. The focus here is
on who am I. This theme was comprised of
several subthemes, all related to a lack of
hormones (testosterone for most, but for a few it
was a lack of oestrogen) which resulted in an
inability to achieve a sense of normality a
clear identity and a sense of self. Experiences
varied dependent on the age of the men, time of
diagnosis and number of negative life experiences.
Thematic Framework

• Unusual sexuality,
• confused gender

Not Normal
Negative and humiliating comments from others
Puberty What happened?
Testosterone

• Perceived physical
• emotional differences

Bullying in adolescence
Normality
Conclusion Physical, emotional and cognitive
symptoms are attributed to a lack of the
necessary hormones (testosterone or
oestrogen). For older men delayed testosterone
replacement therapy imposed severe psychological
distress as they deal with the consequences of
late treatment. Men with KS describe themselves
as visibly different, and experience a disordered
gender identity. Men with KS also experience
increased social stigma and psychological
morbidity that threatens their self esteem
resulting in social isolation. The provision of
psychological support and early intervention is
strongly recommended.
For more information email marianne.morris_at_uwe.ac
.uk