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The XXY Project

Keeping it real

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  • 47, XXY
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  • Library
    • Books
      • Thinking About Your Child’s Sex Development: Support Information for Parents
      • Me, Myself and XXY: Growing Up With Chromodiversity
      • Living With 47XXY, 47XXX & 47XYY (English with Spanish Translation)
      • The KS Story (You are not alone)
      • Tomorrow
      • Gregory and his Extra X
      • Stories and Tips for Siblings of Children with a Disability or Serious Illness
      • The X in Sex; And How It Controls Our Lives
      • The Masculine Mystique of T
    • Health
      • Hormones
        • Testosterone interventions unnecessary for XXY pubertal progression
        • Oxandrolone Treatment Results in an Increased Risk of Gonadarche in Prepubertal Boys With Klinefelter Syndrome
        • The Role of Hypogonadism in Klinefelter Syndrome
        • Clinical Practice Guideline: Testosterone Therapy in Men with Hypogonadism
        • Gender Dysphoria Services: A Guide For General Practitioners and Other Healthcare Staff
      • Cognitive
        • A Review of Neurocognitive Functioning of Children with Sex Chromosome Trisomies
        • Guidance on the Assessment and Diagnosis of Intellectual Disabilities in Adulthood
        • KS Increased Brain Responses Not To Visual Stimuli
        • Understanding Sex Differences to Inform Studies of Diseases of The Nervous System
        • Beyond the Literal Meaning of Words in Children Who Are XXY
        • The behavioural profile of children aged 1–5 years with sex chromosome trisomy (47,XXX , 47,XXY , 47,XYY )
      • Physiology
        • Mortality in Patients with Klinefelter Syndrome in Britain: A Cohort Study
        • Genes Underlying Delayed Puberty
        • Is the prevalence of Klinefelter syndrome increasing?
        • Recent Advances in Managing and Understanding Klinefelter Syndrome
        • Chromosomal Variants Amongst XXY (Klinefelter Syndrome)
        • Clinical Challenges Among 47 XXY Children, Adolescents, and Adults
        • What Is the Biologic Basis of Variations in Sexual Phenotype
        • What microRNAs could tell us about the Human X Chromosome
        • 47XXY and Autoimmune Diseases
        • Are XXY’s more at risk of developing COVID 19?
      • Fertility
        • TESE: When is the right time?
        • So, You Want To Have A Baby?
    • Educational
      • Hormone Replacement Therapy
      • Is the prevalence of Klinefelter syndrome increasing?
      • Chromosomal Variants Amongst XXY (Klinefelter Syndrome)
      • Mary F. Lyon (1925–2014)
      • Recent Advances in Managing and Understanding Klinefelter Syndrome
      • Dr Michael Noble (47XXY)
      • Mortality in Patients with Klinefelter Syndrome in Britain: A Cohort Study
      • A History of Medical Genetics in Pediatrics
      • Genes Underlying Delayed Puberty
    • In Perspective
      • What we wish doctors knew about XXY
      • Psychology
      • If you are a parent
      • The XXY Individual
    • The Darlington Statement
    • Mental Health
      • Mental Health of a Large Group of Adults With Variations of Sex Development in Six European Countries.
      • Autism and social anxiety in children with sex chromosome trisomies: an observational study.
      • Anxiety and Depression in Klinefelter Syndrome: The Impact of Personality and Social Engagement
      • The Lived Experience of 47XXY (Klinefelter Syndrome): A Narrative Review of the Literature
      • Neurocognitive underpinnings among 47 XXY’s and the association with mental health problems
      • Finding Your Way With ADHD: Struggles, Supports, and Solutions
    • An XXY woman with a sword: Weapon Grave at Suontaka Vesitorninmäki, Finland
    • The Centenary of Genetics: Bridges to the Future
    • Images
    • Media
      • Images
      • So you think you know sex?
      • How To Draw a Family Tree
      • Creative Explanation of Klinefelter’s Syndrome
      • What is Intersex
      • X Chromosome Inactivation
      • A Conversation with David Strachan.

Books

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Our Sponsors

The XXY Project is kindly supported by My XXY – ChromoDiversity Foundation, an effective and trusted charitable foundation supporting neurodiversity, improving lives and creating opportunities for those with differences related to X & Y chromosome variations.

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Advocacy + Peer Support

Cirrus Counselling is managed by an XXY individual with an Accreditation in Mental Health and Social Work. Areas of speciality include Autism Spectrum Disorder (ASD-1) with Adults, Alcohol & Other Drugs, Group Art Therapy, LGBTI, Intersex, and Dreamwork.

InterLink  (Queensland)  brings people together to talk about living with innate variations in sex characteristics with the support of trained counsellors and intersex peer workers

Reach Out is Australia’s leading online mental health organisation for young people and parents. Our practical support, tools, and tips help young people get through anything from everyday issues to tough times – and the information we offer parents makes it easier for them to help their teenagers.

Re-imagine Today is co-designed with people living with mental health issues. Many of those involved have lived experience of the NDIS and have used this experience to help you better understand how it all works.

Intersex Peer Support Australia is a peer support, information and advocacy group for people born with variations in sex characteristics and their families.

Kids Helpline is Australia’s only free, private and confidential 24/7 phone and online counselling service for young people aged 5 – 25

Intersex Head To Health is a digital Mental Health resource by the Australian Government connecting you with some of Australia’s most trusted Mental Health organisations. It brings together apps, online programs, online forums, phone services, and a range of digital information resources.

Parents of Gender Diverse Children provides peer support to Parents and those parenting Trans and Gender Diverse children. They realise that parents who are well supported can better support their children.

Intersex Human Rights Australia promote human rights, health and bodily autonomy. Their goals are to help create a society where intersex bodies are not stigmatised and where our rights as people are recognised. They build community, evidence, capacity, education and information resources.

Flourish Australia Being part of the Flourish Australia family is a great way to make new friends, try new things and get more involved with your local community. Connect with us to start feeling less isolated.

ADHD Foundation is a volunteer-run organisation working towards creating projects that support the ADHD community in Australia.

People With Disabilities Australia is a national disability rights, advocacy and representative organisation that is made up of, led and governed by people with disability.

Disability Gateway is a Federal Government initiative that assists all people with disabilities, their families, and carers in locating and accessing services across Australia.

Australian Genetics and Life Insurance Moratorium. In Australia, life insurers are legally allowed to use applicants’ genetic test results to discriminate – meaning that they can deny applicants life insurance or increase the cost based on genetic test results.

 

Understanding 47 XXY

Medical Management of KS among XXY Adults

How To Draw a Family Tree

A Review of Neurocognitive Functioning and Risk for Psychopathology in Sex Chromosome Trisomy XXY, XXX, XYY  

Recent Advances in Managing and Understanding Klinefelter’s Syndrome (47XXY)

Neural Systems for Social Cognition in Klinefelter Syndrome (47,XXY)

A cross-sectional study of early language abilities in children with sex chromosome trisomy (XXY, XXX, XYY) aged 1–6 years

How Sex/Gender Influence Health & Disease

Human X Chromosome Inactivation and Reactivation

Gender Dysphoria in Klinefelter’s Syndrome

A History of Medical Genetics in Pediatrics

Genes Underlying Delayed Puberty

XXY: A Pediatric Quantitative Brain Magnetic Resonance Imaging Case-Control Study

High Normal Testosterone Levels Among Non-Mosaic XXY Infants

Escape from X Chromosome Inactivation: An Evolutionary Perspective

Different paternal origins of  supernumerary X chromosomes among 47XXY brothers

When the Lyon(ized chromosome) roars: ongoing expression from an inactive X chromosome

Reduced Artery Diameters  in Klinefelter’s Syndrome

Ocular Architecture and Function in Patients with Klinefelter Syndrome

 

 

 

 

Community Quotes

When I was younger and developing, I would listen to others for assistance in human behaviour, I was pretty desperate to fit in, and thus I was pretty suggestible, simply because I didn’t know any better. I was and still am in many ways ignorant to social interactions, which my XXY tribe can tell you gets us labelled with Asperger’s, but that isn’t it at all.
XXY. California
The Climb

Regardless of how many people I get to share my life with. I always find time to be lonely. It’s not necessarily about not having anyone but about being different.
XXY Mosaic. Canada.

No one told me that Testosterone might not be the ticket for some XXY’s. For some, Testosterone creates a fluid gender. One day I’m wondering what it would be like to be a woman, and the next, I am shameful, guilty and angry towards myself, wanting to rid my mind of every thought related to me being in the wrong body.
XXY. Colarado,USA
Just an XXY/Intersex Kind of Guy

For many years, I tried to make him like everyone else, tried to get him to do what others were doing, act like others, and speak like others. I was often impatient with him, at times even cruel when, in anger, I said hurtful things. But, in the end, I learned from him to be a better person.
XXY Parent. England
Living With My Son

Men with hypogonadism have been linked with a psychological condition called alexithymia. It is defined as having a difficult time conveying emotions to others as well as interpreting others’ emotions, dysfunction in personal attachment and interpersonal relations. I could see myself being diagnosed with it.
XXY. Oregon, USA
Logophilia

At school, I was bullied for being small, skinny and having red hair. I did learn judo. It was one of many sports and activities my mother put me in, so I could be as fit as possible. Judo gave me immense confidence. I could stand up to the bullies, and let them scrap me, knowing that every bully, no matter their size, would end up apologising, and never would attempt to scrap me again. I gained significant respect and only used martial art in defence.
XXY. New Zealand
In a State of Perpetual Motion

Even having been diagnosed with Klinefelter’s Syndrome, there can still be other issues and powerful emotions that some will find hard to express – to anyone. I am blessed with a loving and supportive family, yet through puberty and into adulthood, with no idea of KS, I was unable to open my feelings to them. I had physical differences, but I had something else – something so sensitive I said nothing to anyone until I was in my early fifties.
XXY. United Kingdom
You Are Not Alone

Too bad they didn’t know I was XXY at birth, but then it was probably for the best as ‘missing out’ has saved me from being medicalised like XXY kids of today who have no say in what happens to their bodies and are administered exogenous testosterone causing their young bodies to virilise. What I’m searching for is not to become a man or a woman; I’m happiest just being me, an XXY individual and I want to explore the many ways I can be just that.
XXY. Minnesota, USA.
Watching, Waiting

A little over a year ago I happened upon the Psychiatrist who had listened so intently to my plight and saw to it that I was placed in safe hands that would eventually guide and make sense of who I was, he looked at me and said “you’ve arrived”  I told him I could not have achieved it without his support, he replied ” I was a tough one to understand yet he was really glad to have experienced ME” to which I replied “so was I”
XXY. Australia
Finding Me

I have always considered myself highly atypical of Klinefelter’s. I hit puberty in the second half of the 4th grade. By the time I was in 7th grade, I was shaving weekly. Aside from a slight learning disability in Math, I have never had any learning deficits. In fact, I was reading on a University level in the 6th grade. I also grew up with and around music. I began by playing the Alto saxophone in the 3rd grade. In 4th grade, I switched to the Trumpet. In 5th grade, I began playing the piano, and by the end of 5th grade, I added guitar to my repertoire.
XXY. Atlanta, USA
Walk With Me

My parents never understood me. So I would say to them, and direct to all parents of XXY boys to men: when your son acts out or seems lazy, inattentive, or has learning problems, don’t blame him. His condition that occurred when u made him, must stick with him throughout his entire life.  Please treat him as normal, try to build him up, not put him down. Throughout my early life and teen years, I heard this a lot.  My father beat me a lot because of this.
XXY. Indiana, USA
In Memory

I’m sensitive and emotional, but every three months I have my testosterone injections, which take 48 hours to kick in. Suddenly I feel like a “man”. It starts with a stinging sensation in my legs, followed by a horrible restlessness and anxiety. Then I want sex and feel irrepressibly drawn toward anyone with breasts. If I’m lucky, I’ll get a one-night stand. Fortunately, the effect wears off after a day or so.
XXY. Segovia, Spain
I’m a Man and a Woman

 

 

Educational Resources

Diversitywise Educational Services provides curriculum, pedagogy and professional development services to early learning centres and schools.

Speech & Language Development Australia is the nation’s peak body supporting and advocating for the needs of children and young people with speech, language and related differences.

A Podcast Initiative  by The National Consistent Collection of Data on School Students with Disability, to assist in learning more about development issues

Brain Facts dot Org
shares the stories of scientific discovery and the knowledge they reveal. Join them as they explore the universe between our ears. Because when we know our brains, we know ourselves.

Executive dysfunction and relation with behavioral problems .These findings suggest that executive dysfunction may be part of the phenotype of children with an extra X chromosome, impacting the ability to function adequately in everyday life.

Google Tools For Special Needs .This information provides a list of many useful Google-related tools and features for users with special needs. It is a rapidly evolving area, and the list will be updated periodically to reflect the most current, and most valuable resources.

SPD Australia: Supporting and Advocating for people with Sensory Processing Disorder

Sensory Processing Disorder: A checklist to help parents and professionals who interact with children become educated about particular signs of sensory processing dysfunction.

Have something to say? Please sign our guestbook

  • Ste
    I found this project and group right after having be...
  • Dean from the XXY Society
    For over a decade now I have volunteered my time...
  • Robert Bridges
    I believe it was the XXY project that found me...
  • Thierry
    I have been browsing your page and your facebook group...
  • Claire
    I have been grateful for this community for a long...

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International Links

Interesting Facts About XXY: The primary purpose of this blog is to raise awareness of XXY and the difficulties the community faces in finding appropriate medical professionals who understand the multifaceted presentation of what it means to be an XXY individual.

The Organization for the Study of Sex Differences (OSSD) is a unique scientific organization that seeks to enhance knowledge of sex/gender differences by facilitating interdisciplinary communication and collaboration among scientists and clinicians of diverse backgrounds.

Klinefelter Syndrome is the informative blog of Raj Baksi, a former Chair of KSAUK and someone who continues to advocate for XXY/KS. Raj is available for public speaking engagements pertaining to XXY/KS

XXYtalk.com is an international support forum for 47XXY, Klinefelter’s Syndrome and associated variants.

Other Sex Chromosome Variations

45 X is a genetic disorder affecting some women and girls. It might cause problems with hearing, vision and infertility, but usually not with intellectual ability. Treatment with hormones can help deal with some of the problems.

46 XX(y) Phenotypically there are three groups of sex-reversed 46,XX individuals. The first classical group includes phenotypically normal XX males, while the second and third groups consist of those with varying forms of genital ambiguity.

46 XX/46 XY  is an exceptionally rare chimeric genetic condition characterized by the presence of some cells that express a 46,XX karyotype and some cells that express a 46,XY karyotype in a single human being.

47 XYY  is caused by having an extra copy of the Y chromosome in every cell of the body. Diagnosis can be made based on prenatal tests, or it may occur during childhood or adulthood if a male has signs or symptoms

48 XXYY  is a chromosomal variation that causes infertility, developmental and behavioural issues, as well as other health problems

48,XXXY  often compared with 47,XXY because of shared features including tall stature and hypogonadism, 48,XXYY, 48,XXXY and 49,XXXXY are associated with additional physical findings, congenital differences, medical problems and psychological features.

Trisomy X (47XXX) is not extremely rare, although one might think so, as the majority of cases go undiagnosed. The incidence has been established to 1/1000 females, since the earliest case series have been published and confirmed by others

Incidence of Sex Chromosome Variations. Knowledge on the prevalence of Sex Chromosome Variations are limited, where delayed diagnosis or non-diagnosis are a continuous concern. We aimed to investigate change over time in incidence, prevalence and age at diagnosis among  XO, XXY, XXX and XYY’s

 

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About

We are an Australian initiative created from a need to tackle misinformation by Doctor and Parent advocacy groups that promote early androgen interventions among infant and adolescent children too young to understand the impact. We believe in a better approach where the individuals’ needs are included in the outcome and only when the person can fully comprehend what’s been asked of them. We hope to promote a greater understanding of the individuals we all are and to accomplish this by seeking your story of how XXY embodies your existence.

Acknowledgement

The XXY Project acknowledges the traditional owners of Country throughout Australia and recognises their continuing connection to lands, waters and communities.

We pay our respects to Aboriginal and Torres Strait Islander cultures, and to Elders past and present. We recognise connection to Country as integral to health and wellbeing.

Do you HAVE SOMETHING TO SAY?

  • Ste
    I found this project and group right after having be...
  • Dean from the XXY Society
    For over a decade now I have volunteered my time...
  • Robert Bridges
    I believe it was the XXY project that found me...
  • Thierry
    I have been browsing your page and your facebook group...
  • Claire
    I have been grateful for this community for a long...

Visit guestbook

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