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 appropriate medical care for their particular needs.

This study is the first of its kind in Ireland that sheds light on what it means to be intersex/born with a variation in one’s sex characteristics. No data set like this previously existed that would facilitate our thinking about how to interrogate aspects of Irish life and society that adversely affect the lives of those born with variations in their sex characteristics. The findings demonstrate that intersex people/those born with VSC are a hidden, vulnerable and extraordinarily diverse and resilient group.

The interview participants are all over forty and their stories document lived experiences of struggling to understand who they are, negative experiences of childhood healthcare, trauma, and attempts at advocacy as they navigate Irish officialdom through health, education and life more generally. In many incidences, the law is not on their side as they seek meaningful and holistic care that is not delivered through rigid adherence to the male-female binary way of thinking about bodies or as they try to learn about themselves in order to assemble a coherent self-concept. There is much room for improvement in terms of health, education and law and the survey participants attest to this also.

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. Further studies are needed to understand the mechanisms leading to the increased VTE rate in KS. Moreover, an investigation into the relationship between TT and VTE is warranted to weigh the benefits of TT in VTE-prone patient groups like KS. Educational materials, such as a patient information pamphlet distributed in clinics and via associations like the UK’s KSA, are also needed to enhance awareness amongst KS patients of their VTE risk and potentially increased risk with TT.

Source

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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 treatments for the disorder, but as many as one-third of cases don’t respond to current therapies.

Scientists have now found a new approach for treating epilepsy that focuses on correcting abnormalities in the blood-brain barrier, which have been associated with epilepsy. The findings have been reported in Nature Communications.

Brain cells use a lot more energy compared to most other cells types in the body. A network of capillaries called the blood-brain barrier (BBB) provides those cells with the nutrients they need, while carefully protecting the brain. The BBB is so extensive, that each brain cell seems to be fed by its own capillary. But when that network of blood vessels becomes disrupted and its integrity is impaired, seizures may occur.

This research has suggested that if the lost integrity can be restored in the BBB, seizures would be prevented. If additional research confirms these findings, it could lead to treatments for epilepsy patients that don’t respond to current drug options, said senior study author Dr. Matthew Campbell, an Associate Professor at Trinity College Dublin. “This work represents one of the first conclusive studies that pinpoint a key feature of seizures that has, to date, not been studied in great molecular detail.”

Continue reading at the source

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 Author

I’m a student currently undertaking a research project entitled “To What Extent do Sex Chromosome Variations Cause Mental Health Issues?”. I’m specifically focussing on Turners and Klinefelter’s syndrome. I thought it would be good to include some perspectives from those with sex chromosome variations to make my research more accurate, so if you have a spare minute please could you fill out my research survey by clicking this link. It shouldn’t take very long and I would greatly appreciate it! Thank you.

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 big pharma companies, a new study claims.

Big pharma money has frequently been shown to influence trials – making them more likely to find what the companies want – but science continues to rely on an honour system by asking researchers to declare their conflicts of interest.

The researchers cross-checked drug company payments made to researchers, available on the Medicines Australia database, with the authors’ self-reported conflicts.

It found that of 323 Australian authors listed in the trials, one quarter had at least one “missing or incomplete conflict of interest declaration”.

Bond University researcher Dr Ray Moynihan, who studies the link between money and medicine, said the research showed a “lack of rigour from the journals and authors that these things aren’t being declared”.

“One of the fundamental problems for medicine and healthcare is that so much of science is funded by companies who have a vested interest in the outcome of the studies,” he said.

Continue reading….

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 negative narratives and stereotypes) that tend to feed into the stigma surrounding ADHD and cause psychological harm to those living with the disorder, and instead, use language that fosters understanding and awareness of ADHD and aligns with the recovery paradigm i.e. hope for the future, acceptance of disability, personal empowerment, etc.(as outlined in the National Health and Medical Council Recovery-focused language guide).

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

In conversation with an Executive Director of AXYS some years ago at a time when they were trying to embrace Intersex and what bearing it would have on the general population, I found it difficult to shift his focus away from gender identity which in effect was a ‘get out of jail free card’ because it would give them the right to say not all XXY’s were intersex when in effect they actually are. You see Intersex or being Intersex relates to Biology our innate selves what makes us who we are, whereas Gender relates to identity and who we perceive ourselves to be, the two are not related. At that time, AXYS represented several different sex chromosome variations, such as XXX, XXY, XYY, XX/XY and of those I was asked why XXY’s were the ones more likely to experience gender dysphoria, I told him the answer was staring him in the face, that the presence of two X chromosomes was always going to be counterproductive when the individuals were administered Testosterone as their primary sex defining hormone.

Sadly AXYS never did ‘officially’ embrace the concept of Intersex and nor for that matter the concept of heightened gender dysphoria amongst XXY’s who are administered androgen therapies. In that absence, because AXYS is a formidable voice that works closely with doctors who make the rules regarding our medical treatment, all those who for whatever reason were unable to tolerate testosterone are left with deep-seated psychological scarring of being forced to conform to something they are not. To this day there is no dedicated medical care for XXY’s who are unable to adhere to Testosterone ‘the standard treatment of care, which is all the more reason why research of this nature is so crucial to shining a bright light on segments of the ‘community’ who are never included in ‘support’ groups and rarely if ever spoken of.

The research has the full backing of The XXY Project. We would appreciate it if those of you who have followed our advocacy over the years and have an affiliation with XXY would complete the survey and share it amongst your networks. By taking part you will be helping to further understand gender identity among individuals with KS/XXY and contributing towards shaping the psychological support required for those who may experience discomfort or uncertainty as a result of their gender identity experiences

The University of Derby (United Kingdom) is conducting this 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, and/or prior to and during hormone replacement therapy (HRT) (if applicable). To inform potential recommendations about providing KS/XXY specialist psychologists to support individuals with KS/XXY.

The study has been reviewed by two members of staff on behalf of the University of Derby College of Health, Psychology and Social Care Research Ethics Committee and is in accordance with the ethical guidelines of the British Psychological Society; a professional body of psychologists in the UK who overview research to ensure that it protects the safety, rights, wellbeing and dignity of anyone who takes part.

Link to Study

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 from that of males. Contributions are sought from XXY’s above twelve years of age and (if necessary) parents and guardians are welcome to assist.

The questionnaire consists of twenty-three questions and should take around ten minutes to complete. Your responses will be confidential and no information that could personally identify you will be collected.

Once completed, the results and further directives will be shared with the Klinefelter Syndrome Association.

We appreciate your help and ask that you share this with your networks

Link to questionnaire

Emotional Distress: Can you relate?

I think that all of my life I’ve had problems with speaking out of turn, butting into other people’s conversations, taking things out of context. Making inappropriate and sometimes hurtful comments, not intentionally, but still.

I now understand those traits were partly a result of my being 47xxy, but the people that were affected by my apparent lack of manners did not share that insight, and sometimes how they reacted could be really hurtful. It’s a hurt that never leaves my mind.

Back in ’93, I went on a hunting trip with my older brother and some of his friends. Although I had been on an earlier trip with most of these guys, one of them was new. He was probably, at the time, my brother’s best friend. At the end of our first day out this person said to me “you are right off the wall. If I didn’t know your brother so well, I would have killed you by now.” The hurt that I felt then which has continued to this day is beyond words. I didn’t know what he was talking about and I still don’t. And although I was aware of my being XXY at that time, I didn’t relate my actions to that. Even after twenty-seven years, that hurt still lingers.

~ Erin ~

When our community talks about pain, we mainly talk about physical pain we have experienced in our lifetime, but rarely if ever, do we mention emotional pain, which can be equally as debilitating.

If you are XXY and have experienced emotional distress from a sibling, a friend, colleague or anyone else you can think of, we invite you to share that experience with us and together, we can work at lightening the load.

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 one of those rare, frightening ‘one in a million’ genetic disorders? 

Not at all. About one in five hundred boys and one in one thousand girls are born with an extra 47th X chromosome. In fact, he explained it is the most common chromosome difference in boys, more so than Down syndrome (Trisomy 21). He advised the parents to think about it, be sceptical about what they would read online, and then referred them to a genetics expert. 

The genetics expert explained it is an “invisible, non-hereditary wide spectrum” syndrome, probably milder than research done in prisons and hospitals suggested, but… it was impossible to say what the outcome would be. The baby might end up severely handicapped. On the other hand, 3 out of 4 people were never diagnosed, and maybe most cases were very mild. Nobody really knew. He mentioned a famous successful surgeon had it but kept it secret as it could destroy his reputation… The parents left even more confused. 

In the end, they decided to keep the baby. 5 months later a boy was born, and they called him Merlin. They had no clue how things would turn out. 

“Me, Myself and XXY: Growing Up With Klinefelter” is the eye-opening story of Merlin. Designed for teens, parents, educators and health professionals, it tells of the challenges, frustrations and myths around Klinefelter in the form of a children’s storybook. It shows how schools had never heard of the syndrome and provided the wrong kind of support, how health professionals missed the biggest issues he and his family faced, and how close he came to being unnecessarily instituionalised.

It shares key takeaways such as the life-changing positive effect of early diagnosis and intervention, new learning strategies to help unlock natural abilities and strengths and go-to resources for parents, educators and healthcare professionals.

It is also a funny, moving real-life story, packed with anecdotes and insights that bring to life what growing up with little-understood differences can be like. The book is set to be ready for release in 2022. 

The problem is, surprisingly little has changed since 2004. While research has progressed, and social media now allows us to form vibrant communities and speak up, in other ways, we seem stuck in the past:

  • 3 out of 4 people are still not diagnosed, meaning millions of people have no access to early intervention
  • Myths and misconceptions abound, leading to stigma & stereotypes
  • Parents are unware and unprepared for the diagnostic when it comes
  • Schools and teachers haven’t heard of it and don’t have learning guidelines
  • A recent analysis of 22 research papers over the past 20 years shows that healthcare remains deficient and uncoordinated between specialities 

However, we have learned one important thing: nothing matters more in making a positive lifelong difference than early diagnosis and intervention.

Make Change Happen Now

“Me, Myself and XXY: Growing Up With Klinefelter” is the kind of life-changing book that could have made life a lot easier and better for Merlin’s parents & siblings, helped Merlin’s teachers know what to do, and given healthcare professionals a better sense of what to look out for – had it existed. Now you can make it happen. 

The only reason we’re able to take action is thanks to our amazing donors. We believe it is urgent to get Merlin’s story published and into the hands of the widest possible audience, and that’s where everyone can make an immediate impact. 

By giving $25 or more, not only can you make a difference with teens and families to reassure and give them an idea of what to expect. You will bring the story into the offices of primary physicians, therapists. endocrinologists, psychiatrists, clinics, hospitals as well as the libraries of elementary and middle schools, high schools and universities.

Limited Collector’s Edition Reserved for Early Donors

In addition to allowing copies of “Me, Myself and XXY: Growing Up with Klinefelter” to be distributed where it matters, all donors who contribute at least $25 before the end of the year will be personally thanked by the President of our Foundation, and those who give over $100 by Dec 31st will receive their own limited collector’s edition of “Me Myself & XXY” upon its publication in 2022.