Intersex Awareness Day: From an XXY/Klinefelter’s Perspective

This video is a joint collaboration between KSA (UK) and The XXY Project. It was an honour to work with KSA, and we look forward to all future engagements. We hope awareness of this nature will one day play a crucial role in eradicating the stigma that parents have long associated with Intersex and that doctors learn to keep an open mind when confronted with an XXY person seeking medical care.

Special thanks to AJ Howard and Alison Bridges (KSA) for making this possible.

Happy Intersex Awareness Day

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 intersex children if those treatments are not deemed medically necessary.

It follows a Victorian Government announcement in July, that it aims to prohibit non-consensual medical interventions that could be deferred.

The commission has heard from people who have lost the ability to give birth, are unable to control their bladders and have lost sexual function as a result of medical interventions they did not consent to.

Commission president Rosalind Croucher said many intersex people were angry, and urging for change.

The medical interventions should happen only with the consent of the person concerned

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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 lost altogether due to Western colonisation. The short animation Kapaemahu is an adaptation of a nearly forgotten mo’olelo about four māhū – people possessing both male and female qualities in mind, body and spirit – who brought healing arts from Tahiti to Hawaii. As the story goes, the māhū imbued with their powers four boulders, which stood at a sacred site for hundreds of years until they were forgotten. Told through a modern lens by the Native Hawaiian teacher, filmmaker and māhū Hinaleimoana Wong-Kalu and the Emmy Award-winning US filmmakers Joe Wilson and Dean Hamer, Kapaemahu brings renewed life to this moʻolelo via animations inspired by Polynesian tapa designs and a touch of Hawaii’s recent history.

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Research for American’s over 65 who are Intersex or living with a DSD

Here’s an opportunity for you to participate in research and get paid for your time. The author (Nik Lampe) is not associated with The XXY Project; we are merely the messenger and encourage those of you who qualify to participate.

Nik Lampe, a Ph.D. student in the Sociology Department at the University of South Carolina is conducting a research study as part of their dissertation research requirements in UofSC’s Sociology Ph.D. Program. They are specifically studying the health and health care experiences of Americans 65 years and over who identify as intersex, someone living with differences in sex development (DSD), or someone who identifies with a different sex identity than what they were assigned at birth. If you decide to participate, you will be asked to talk via telephone or virtually meet with Nik for an interview about your health and health care experiences. You will receive a $40 prepaid Visa debit card for participating in the study after you complete the interview. Nik is happy to answer any questions you may have about the study. If you would like to participate, please follow up with Nik at (lampen@email.sc.edu or 803-881-8332 via text or telephone) to discuss your participation.

Weapon Grave at Suontaka Vesitorninmäki, Finland

In 1968, a weapon grave with brooches was found at Suontaka Vesitorninmäki, Hattula, Finland. Since then, the grave has been interpreted as evidence of powerful women, even female warriors and leaders in early medieval Finland. Others have denied the possibility of a woman buried with a sword and tried to explain it as a double burial. We present the first modern analysis of the grave, including an examination of its context, a soil sample analysis for microremains, and an aDNA analysis. Based on these analyses, we suggest a new interpretation: the Suontaka grave possibly belonged to an individual with sex-chromosomal aneuploidy XXY. The overall context of the grave indicates that it was a respected person whose gender identity may well have been non-binary.

There is an enduring fascination with women buried with weapons, but the topic continues to be debated. A specific Finnish find, an early medieval inhumation grave dated to (ad 1050–1300) found at Suontaka Vesitorninmäki in the municipality of Hattula (formerly Tyrväntö) (see above), has often been interpreted as a woman buried with two swords. The interpretation is based on dress accessories and jewellery, which suggest that the individual was dressed in feminine clothes. For decades, the grave has been a popular example of powerful women in Late Iron Age and early medieval societies. At the National Museum of Finland’s permanent exhibition between 1995 and 2016, the grave was used as evidence of female leaders in the past. In popular discussions and contexts, for example history forums on the internet, international sword replica shops, and even in the controversial ‘Meet the Viking’ exhibition at the National Museum of Denmark, the decorated bronze-hilted sword allegedly found in the Suontaka burial is presented as a female warrior’s weapon.

In this article, we present the first detailed study of the Suontaka grave. We undertook a careful analysis of the original field documentation to determine whether the grave had initially been a double burial, and to provide clarification on its context. To investigate the grave’s original context in detail, we conducted a study of microscopic animal hair and fibre remains from the soil retrieved from the grave. Lastly, we studied ancient DNA (aDNA) from the skeletal remains to infer the chromosomal sex of the individual. We conclude the article by drawing the results of these analyses together and discuss their possible meaning in the framework of gender archaeology.

As bone material from the Suontaka grave consists of only two highly degraded femur fragments, an osteological analysis could not be carried out. Ancient DNA (aDNA) analyses, on the other hand, may be used to infer the chromosomal sex of an individual even from low quantities of skeletal material. We extracted and sequenced aDNA from one of the femur fragments in the archaeogenetics laboratory of the Max Planck Institute for the Science of Human History in Jena, Germany. Unfortunately, the sample gave a very low yield of endogenous human DNA: even after a capture procedure to enrich for human DNA, the data contained only 106,781 sequence reads mapping to the human genome (of a total of 18,250,176 overall reads), 8329 of which had a mapping quality above 30. Of these, 2534 also showed post-mortem damage (PMD) scores above 0 from PMDtools (Skoglund et al. This paucity of data seriously limited the range of aDNA analyses that could be conducted, including those for data authentication. Therefore, we did not extend our genetic analyses beyond sex determination, as that is among the analysis types that need the least amount of data.

A: plan of the Suontaka burial. ‘Täckdike’ marks the water pipe trench which led to the discovery of the grave. B: artist’s reconstruction of the burial, showing the position of the objects on the body. A reproduced by permission of Finnish Heritage Agency. B: drawing by Veronika Paschenko.

Existing methods for chromosomal sex determination lack power for data as sparse as this, but their results suggested that the Suontaka individual’s X-chromosomal and Y-chromosomal read counts fit neither those expected for XX (female) nor for XY (male) individuals. We therefore developed a novel approach to estimate the chromosomal sex of the individual, where we down sampled sequencing reads from individuals of known genetic sex to the number of reads observed in the Suontaka individual (n = 8329) to model four possible scenarios that could have produced the observed data: XX, XY, a contaminated sample with a mix of reads from XX and XY individuals, and an aneuploidic karyotype XXY (male with Klinefelter syndrome).

Despite the extremely low sequencing coverage, we found overwhelming evidence that the genetic data of the Suontaka individual most closely resemble an XXY karyotype: our model classified the Suontaka individual as XXY at a 99.75 per cent probability, as contaminated with a 0.25 per cent probability, and as XX or XY with a very low probability (less than 10-6 in either case). In a subset of data that was enriched for plausibly ancient-looking reads (n = 2534), the corresponding probabilities were 99.96 per cent for XXY, 0.04 per cent for contamination, and again negligible for XX and XY; it therefore seems that the XXY signal in the data is not driven by potential modern contaminating DNA. Even when we take into account the low population frequency of the XXY karyotype, the XX and XY scenarios remain extremely unlikely, and—unless we assume a considerably high prior probability of contamination—the Suontaka individual’s karyotype is still most likely to be XXY.

The condition in which males are born with one or more extra X chromosomes is known as Klinefelter syndrome. With its prevalence of 1 in 576 male births, XXY is the most common sex-chromosomal aneuploidy in humans. The clinical signs of karyotype XXY vary from very subtle and unnoticeable to apparent differences in physical features. The anatomical appearance of XXY individuals is male, and some of them never even notice that they have the condition. In some cases, the clinical signs are stronger: XXY males can be infertile and have hypospadias (the opening of the urethra is on the underside of the penis), small phallus and testicles, and gynecomastia (breast growth). Testosterone deficiency may cause delayed or incomplete pubertal development. Sometimes effects on physical and cognitive development are reported and, according to some studies, modern XXY males may consider themselves more sensitive and unassertive than others . Interviews also suggest gender-related insecurities stemming from the XXY males feeling physically more feminine than other mal. Because the modern XXY males may compare their experiences to modern expectations of sex and gender, it is difficult to say how the physical and possibly psychological aspects would have been understood and displayed in eleventh–twelfth-century Finland.

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Bodies In Doubt

An American History of Intersex second edition: Elizabeth Reis

From the author:

When I first published Bodies in Doubt: An American History of Intersex in 2009, not many people had even heard of “intersex” (atypical development of genitals, chromosomes, hormones and gonads), though of course individuals have always been born with these traits. More than a decade later, much has changed. Intersex is now in the public eye, in large part due to the efforts of determined advocates who have been working since the 1990s to change the medical standard of care for intersex children.

Johns Hopkins University Press requested a second edition of my book because of the growing public awareness of intersex issues, which have gradually—in historical time, rapidly—entered the mainstream. Through television, as in the MTV show, Faking It, in new YouTube channels and podcasts by intersex people, and in YA novels that feature intersex characters, more and more people are becoming aware of how people born with intersex have been wronged by the medical community.

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Victorian intersex oversight panel proposal

Equality Australia is inviting you to tell them what you think about a proposed scheme to end deferrable and unnecessary medical interventions on intersex people without their personal consent. They want to hear from people born with innate variations of sex characteristics and their families, clinicians and health professionals, and other interested stakeholders about a draft proposal they could recommend to the Victorian Government, who have asked them – working in partnership with Intersex Human Rights Australia – for advice on establishing an intersex oversight panel.

More information can be found here

IHRA is Seeking a Senior Projects Officer

Intersex Human Rights Australia (IHRA) is a national not-for-profit company by and for people with innate variations of sex characteristics. They were formerly known as OII Australia. They promote human rights, health and bodily autonomy. Their goals are to help create a society where intersex people are not stigmatised, and where rights are recognised.

The Senior Projects Officer for IHRA will work collaboratively with the Executive Director and other staff to manage and coordinate the timely delivery of projects and other activities. This is a senior role which requires the successful applicant to demonstrate experience in writing and communication, public speaking, systematic advocacy, and community development. It also requires the successful applicant to be able to work within the human rights and health advocacy spaces, with well-developed interpersonal skills for working with community, engaging with broader community, allies, and policy makers.

The XXY Project asks that you please share this with those whom you think might be interested

Closing date is 5pm Friday 25th of June 2021 (AEST)

Application and further details can be found here

Klinefelter Syndrome In An Identical Female Twin

Photo credit: Babatunde Olajide
Lekki – Ikoyi Link Bridge, Nigeria.

Although seldom reported, variances in Klinefelter’s Syndrome are only rare in the sense they are rarely reported. Usually this type of variant is documented as Androgen Insensitivity (AIS) and mostly because the genitalia more closely matches that of a female and not male, even in instances of ambiguity and with a clear XXY karyotype the preference among western researchers is for an AIS classification, So kudos to the West African’s for this Klinefelter diagnoses, a clear reason why might be they are not constrained by big pharmaceutical firms and parent advocacy groups insistent on leaving things as they are, where doing so helps to shore up the fragility of XXY/Klinefelter’s maleness. Not helping matters is the medical communities  insistence that KS and XXY be used interchangeably and for reasons that infant children can be administered potent androgens designed for adults, all in the absence of any clear need, only that it will virilise their bodies in keeping with a parents wishes for a ‘male’ child.

In this instance neither the child nor the parents sought Androgen therapy, yet it remains the treatment of choice for doctors whose concept of the original clinical description of Klinefelter’s Syndrome, that of a male phenotypical appearance with female body habitus, gynaecomastia, small testes, remains justifiable in their administration of potent sex defining androgens. We firmly believe doctors can and should do so much better and that in all instances of a KS/XXY diagnoses the first line of treatment should be a referral to a clinical psychologist to ascertain what if any hormonal treatment is right for them, doing so would alleviate established findings of mood disorders post diagnoses and treatment with androgens.


A 19-year old lady presented at the Surgical Out-Patient Department of State Specialist Hospital, Yobe state, Nigeria; on self-referral. She complained of bilateral, painless, groin swellings that were noticed since 10 years ago. There was no change in size or change in the skin overlying the mass. The patient is an identical twin, delivered by a 35-year-old mother following an unsupervised pregnancy. Both twin babies were said to have normal developmental milestones and developed female secondary sexual characteristics at puberty. Parents noticed the bilateral groin swellings in the index patient, but, did not give it any significance due to its painlessness. The patient became worried by her failure to achieve menarche at the age of 18 years like her twin sister. She presented at the hospital on self-referral because, she thought her failure to achieve menarche may be related to the groin swellings

On examination, a tall, slim lady was seen with an obvious feminine body habitus, bilateral Tanner stage three breasts and feminine distribution of pubic hair. There are bilateral ovoid groin swellings with no demonstrable visible or palpable expansile cough impulse, each about 342cm, not warm or tender, firm, smooth with well-defined margins. They were freely mobile. Vaginal examination revealed a micro-penis, about 6cm in non-erect position, blind ended 2cm vaginal cavity and absent scrotum. Central Nervous System examination showed a fully alert and oriented patient with excellent Mental functions and no visible speech difficulty. No cardiac or pulmonary abnormalities were noted.

Abdominal USS revealed bilateral benign groin swellings in keeping with testicular tissues, absent uterus and ovaries and right renal agenesis. Buccal smear showed no Bar Bodies. Fasting Plasma Glucose measured was within normal range. Bilateral, open, groin exploration was done after an informed consent and excisional biopsy of the groin masses was done. Histological assessment showed groin masses made mainly of Seminiferous tubules. Both patient and parents opted to maintain a feminine gender despite detailed explanation of the diagnosis. Although patient and parents gave consent for publication of a case report, they denied consent for taking photographs of the face or sexual organs because of their religious beliefs. The other twin sister is phenotypically female with well-developed breasts and a grossly normal uterus, ovaries and capacious vagina. She menstruates regularly.

Discussion

The term Klinefelter Syndrome was initially a clinical description of a phenotypic appearance of a male with female body habitus, gynaecomastia, small hypoplastic testes and primary infertility. The speech and cognitive impairment is not a universal occurrence and depressive moods often begins after clinical diagnosis. Karyotyping revealed the classical chromosomal anomaly of 47, XXY and the other mosaics. Some studies placed the incidence of Klinefelter syndrome in the neonatal period at 1/500-1000 and in adults at 1/2500. This study however, alleged that the incidence of KS in adults may be under-reported due to lack of life-threatening morbidities and estimated that more than 50% of cases of KS go undiagnosed. The incidence among infertile patients is about 11% of azoospermic and 0.7% of oligozoospermic men with 47, XXY karyotype. There is dearth of literature highlighting the incidence in Africa, particularly, the West African region and also the incidence among Identical Twins.

Diagnosis is often delayed, especially in Africa. This problem has been noted globally. Some reports indicated that postnatal diagnosis of XXY is often delayed, and parents are often left confused about the phenotypic appearance of their child and often perpetually anxious about some of the cognitive impairments and psychosocial disorders exhibited by the older children. Even in developed nations a prenatal diagnosis of KS is often incidental following amniocentesis for other unrelated events and the babies often have other congenital anomalies that may put significant strain on the ability of parents to take decision about the fate of the pregnancy.

Our patient presented at the age of 19 years in keeping with the delayed diagnosis noted in previous reports. She failed to achieve menarche despite the presence of a female body habitus, well developed breasts and the presence of what looked like a normal vagina. The decision of the patient and her parents to reject treatment and maintain a feminine gender hampered the use of medical assistance. Many of the patients with KS improve on Testosterone Replacement Therapy (TRT) depending on the severity. Intramuscular injection of testosterone is the most common method of treatment. Although the extent of response to treatment is variable.

Klinefelter Syndrome in an Identical Twin: A Case Report and Review of Literature

Aliyu, Ningi, Babayo, and Buba,

U.N Human Rights Council to Investigate Violations and Abuses Against Intersex Persons.

The Vienna Declaration states that human rights are universal, indivisible, interdependent and interrelated. The VDPA makes clear that “every person is born equal and has the same rights to life and welfare, education and work, living independently and active participation in all aspects of society”. However, intersex people – that is, individuals who are born with sex characteristics that do not fit the typical definition of male or female bodies – continue to face serious and widespread human rights violations and abuses.

Intersex persons are often denied full access to their medical records.

Throughout their lives, people with diverse sex characteristics face discrimination in all areas of life, such as access to education, health, employment and sports, among others, as well as restrictions on the exercise of legal capacity and in access to remedies and justice.

In many countries around the world, intersex people are subjected to medically unnecessary surgeries, hormonal treatments and other procedures in an attempt to change their appearance to be in line with gendered societal expectations of male and female bodies without their full and informed consent.

The root causes of these human rights violations and abuses include harmful stereotypes, spread of inaccurate information, stigma, taboos, and pathologization.

It is high time this Council address human rights and abuses violations against intersex people and their root causes.

Furthermore, the COVID-19 pandemic has worsened the inequalities already faced by intersex people.

We call on governments as a matter of urgency, to protect the autonomy of intersex adults and children and their rights to health, and to physical and mental integrity so that they live free from violence and harmful practices.

Governments should investigate human rights violations and abuses against intersex people, ensure accountability, reverse discriminatory laws and provide victims with access to remedy.

We encourage Governments to work in collaboration with intersex-led organizations in raising awareness and understanding about the human rights of intersex people.

Signatory countries at time of delivery of the statement were: Albania, Argentina, Australia, Austria, Belgium, Canada, Chile, Cyprus, Czechia, Denmark, Estonia, Finland, France, Germany, Greece, Iceland, India, Ireland, Israel, Italy, Lithuania, Luxembourg, Malta, Mexico, Netherlands, New Zealand, Pakistan, Panama, Portugal, South Africa, Spain, Sweden, and Uruguay. Please note that Costa Rica has signed the statement after delivery.

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