Blog

47XXY/KS Awareness Day 2022

The 10th of May 2022 is the day set aside to mark this important day of awareness. We can think of no better way to promote it than sharing a video presentation from the Klinefelter's Syndrome Association UK. Unlike all previous presentations, by Klinefelter Syndrome / XXY organisations throughout the world, this particular one was … Continue reading 47XXY/KS Awareness Day 2022

Mapping the Lived Experiences of Intersex/Variations of Sex Characteristics in Ireland

Kudos to Tanya, Maria, Mel and Anthony at DCU for finalising and publishing this invaluable report in such unprecedented times. It is hoped the finding will lay the groundwork to improve the lived experiences of those not yet diagnosed and all others who have gone unnoticed or have not been able to find resources and … Continue reading Mapping the Lived Experiences of Intersex/Variations of Sex Characteristics in Ireland

Increased risk of Venous Thrombosis in XXY/KS further exacerbated by testosterone therapy

This study demonstrates poor awareness of the known VTE risks in KS and the potential VTE risks of TT within this cohort. Patients not informed of the inherent risks associated with their condition may be less vigilant to complications, unaware of lifestyle decisions affecting risks, and not able to make informed decisions about medical care. … Continue reading Increased risk of Venous Thrombosis in XXY/KS further exacerbated by testosterone therapy

A New Approach to Seizure Treatment

There are many types of epilepsy, a brain disorder that causes recurrent seizures or periods of altered behaviours or sensations. Around one per cent of the world's population is thought to be impacted, or as many as 70 million people. In epilepsy, the electrical signals transmitted through neurons in the brain are disrupted. There are some … Continue reading A New Approach to Seizure Treatment

Mental Health Research Study

A chance for those of you with a Variation of Sex Development to participate in research. The author is focussing on those with Turner's and Klinefelter's Syndrome and would appreciate your input. From the AuthorI'm a student currently undertaking a research project entitled "To What Extent do Sex Chromosome Variations Cause Mental Health Issues?". I'm … Continue reading Mental Health Research Study

One in four medical researchers fail to declare conflict of interest

For anyone who has ever wondered why 47 XXY/Klinefelter research is biased in favour of masculinity, testosterone and fertility treatments, then look no further than this revelation published in The Journal of General Internal Medicine. One in four Australian medical researchers fails to declare important conflicts of interest in medical trials, such as payments from … Continue reading One in four medical researchers fail to declare conflict of interest

Talking About ADHD Language Guide

AADPA is excited to release the newly developed ‘Talking about ADHD’ guide. The guide was developed in conjunction with Neurodevelopment Australia and has been endorsed by the ADHD Foundation, ADHD Australia, and Parents for ADHD Australia.The aim of the guide is to encourage people to think about and stop using words/rhetoric (including words that elicit … Continue reading Talking About ADHD Language Guide

A qualitative exploration of gender identity among individuals with Klinefelter’s Syndrome/ 47 XXY.

The University of Derby (United Kingdom) is conducting research to explore the experience of gender identity among KS/XXY individuals and to understand if any of these experiences have affected an individual’s well-being. To understand the psychological support offered to individuals that may have experienced gender identity discomfort or uncertainty at any point in their lifetime

Gender Identity and 47 XXY Survey.

The KS/XXY clinic at St. Thomas’ Hospital in the United Kingdom is seeking your help with conducting some valuable research, part of which includes a questionnaire that seeks to understand the varying gender representations seen amongst 47 XXY's. The findings will be used to determine how the clinic might better support those whose identities differ … Continue reading Gender Identity and 47 XXY Survey.

Please Help Merlin Tell His Story and Change Lives

In 2003, when the paediatrician broke the news to the expecting parents that their future child had been diagnosed 'in utero' with a condition called 'Klinefelter Syndrome’ or “XXY’ - and gave them the option to terminate the pregnancy - they were stunned.  Why had they never heard of it? How bad was it? Was this … Continue reading Please Help Merlin Tell His Story and Change Lives

AHRC recommends all unnecessary medical interventions on Intersex children be prohibited.

A landmark Human Rights Commission report, to be released tomorrow, recommends all Australian states and territories prohibit unnecessary medical treatments that modify a child's physical, hormonal or genetic sex characteristics until they are old enough to consent. If accepted, the recommendations will take away the right of parents to agree to treatments on behalf of their … Continue reading AHRC recommends all unnecessary medical interventions on Intersex children be prohibited.

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Developmental Language Disorder (DLD) Awareness Day

Friday the 15th of October is Developmental Language Disorder Awareness Day.Even if you've never heard of Developmental Language Disorder (DLD), you probably know someone with it. DLD is very common, and on average 2 children in every class of 30 have the condition. DLD is when a person has difficulty talking and understanding spoken language. … Continue reading Developmental Language Disorder (DLD) Awareness Day

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The nearly forgotten origin myth of Hawaii’s third-gender healers, as told by one

Could the Māhū have been XXY or some other form of Intersex? In Hawaiian culture, moʻolelo means story, tale or myth, but it also refers to history. Traditionally passed down through oral storytelling, moʻolelo serve as a connection to the past, carrying wisdom and entertainment across generations. Over the centuries, however, many moʻolelo have been censored or … Continue reading The nearly forgotten origin myth of Hawaii’s third-gender healers, as told by one