Growing old with Alfred

Good to see The Chromodiversity Clinic making headway and reaching out to the people most impacted by genetic differences. As someone who has written extensively about my own experience, I can honestly say when opportunities arise that afford us the opportunity to reach out to an audience beyond social media chat rooms, we should grasp them with both hands. The hope is that our life experiences will make someone else’s journey to acceptance that little bit easier to manage.

In this podcast, the host speaks with Alfred Jonker, the President of the Dutch Klinefelter Association and a visionary in his approach to supporting people with common chromosomal differences.

In this first episode of two, you’ll hear the story of how he found out about his own Extra X, the challenges he faced and coping mechanisms he discovered growing up with a chromosome diversity, and why he believes early detection is the key to unlocking better futures.

What we wish doctors knew about us

If you are a doctor and consider yourself an expert in all things XXY, then it’s best to leave now because you will never learn anything about us. Adult XXY’s often have adversarial relationships with physicians. If you have a patient like that, don’t take it personally, it’s usually because the medical community has mistreated us for several decades. We might be wary when we meet a doctor for the first time. We assess you as a potential doctor as you consider us a likely patient.

Please don’t assume that you are more knowledgeable by going to Medical School than those of us who live it. When you went to medical school, research done and given to you about XXY was smaller than a paragraph, and most of it was negative.

I need my doctor to keep an open mind. Their primary oath is not to harm. I expect them to be interested in new studies and educate themselves about the latest research in complex data and testimonials of XXY people. If I say testosterone is making me ill or if I ask for a trial of estrogen, please explain the outcome without judgment and based on my medical tests. Please respect that I know my body and am in sync with how I feel.

Remember, I am a human being first, not a condition, disease, anomaly, or freak of nature. I am so much more than my chromosomes and my physical body parts. Care for my body to keep it healthy but don’t try to manipulate or change it with hormones or surgery to how you think it should be without asking me first.

Avoid assumptions. Just because I also have a phallus, don’t assume that the best solution is to cut off my breasts. Maybe my breasts are an intricate part of maintaining my inner sense of well-being. I need my doctor to show me how to give a self-breast exam for breast cancer and teach me how often I should do this.

Take the time to explain the virilising effects testosterone will have on my body and allow me to decide if I want to incorporate body and facial hair, male pattern baldness, and hyper sex drive into my being. When you consider any treatment or procedure, be sure also to tell me what will happen if I choose to do nothing.

Just because I choose to identify my gender as male and take testosterone does not cancel out any in-betweenness I might display. Testosterone does not change my genetics. Let me talk about how I experience the Intersex quality of my being in an open, non-judgmental place of safety. The most important aspect of life for all XXYs is appropriate medical care. Forcing them to limit their gender expression to male-only can harm their well-being.

Talk to me, not at me and not just about me with my parents. I can understand things if explained to me, and I can make decisions about my own body. Be honest with me. Ask permission to examine me so I know that you recognise my body and choice. Don’t speak in absolutes or tell me how I will turn out. Always remember that my needs come before the needs of my parents, my doctors and society. If you are unsure about my needs, please proceed cautiously, especially in areas that cannot be undone, such as mastectomy.

Ask to see me without my parents always being in the room. Allow me or my family to disagree about a particular treatment you wish to try. Be willing to be a part of a respectful negotiation process about any disagreements regarding treatment. Celebrate my successes with me. Ask me about my hopes, dreams, and plans. Don’t fix my gender without helping me to understand who I am. Don’t try to fix me with hormones or surgical intervention before I am old enough to understand.

Qualities We Look For In a Doctor

  • Curiosity.
  • An ability to actively listen.
  • Someone who provides cooperative healthcare as in co-relationship, not a doctor “doing” something to me, but a doctor working with me to help me achieve my optimal health.

Podcasts: By The Chromodiversity Foundation

Photo by: Harry Cunningham

We think you will like this excellent podcast initiative by Elliot Polak, of My XXY – Chromodiversity Foundation that makes understanding research papers a great deal easier for those who yearn for information but fail to grasp the medical language they use. Elliot breaks it down into its raw form and goes to great lengths to ensure it is understood.

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.

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.

About

The XXY Project is an Australian initiative crafted from a need to tackle misinformation perpetrated by Doctor and Parent advocacy groups promoting early androgen interventions among infant and adolescent children who are too young to understand the metamorphism expected of them.

We believe in a better approach where the individuals needs are included in the outcome and only at a time when they are able to fully comprehend what caregivers expect of them. Our mission is to promote a greater understanding of the individuals we all are.

What our readers are saying

This is an excellent resource, thank you for compiling it. I will make sure my doctor and friends know of its existence.
Thanks

Matthew

This is what’s needed!
I’m very pleased The XXY Project exists and how it will allow us to learn and contribute our own experiences.
Thank you.

Chris

We should never make assumptions when confronted with an XXY individual of any age, and The XXY Project makes this perfectly clear.
Thank you.

Dr. White

I’ve been reading over The XXY Project for most of today and I find the information to be the best I’ve ever come across. This site is exactly what I need in my life and I can see how it would be an excellent platform for helping other’s.
Many thanks.

Shane

Together we can make a difference.

Tomorrow

Just published and made available through Amazon, “Tomorrow” written by Nathan Bowker an XXY individual who identifies their gender as Non Binary, Tomorrow documents the authors lived experiences from difficult school years to an eventual diagnoses of Klinefelter’s Syndrome in their early twenties. Unlike a lot of squeaky clean accounts of living with Klinefelter’s Syndrome, Nathan’s account is not like any of those, instead we catch a glimpse of the raw realities of struggle, awareness, eventual acceptance and then a yearning for research so as to better understand the XXY vessel they reside within and to share that with you, the reader so that you might also understand yourself a little better

“My middle school years marked a time of increased difficulty. I had a difficult time in English class. There were so many rules regarding verbs and predicates. The concepts and terms were very confusing. The curriculum was geared toward brains that had reached a level to understand complex ideas, but it wasn’t inclusive to people like me. I remember an English teacher in the 7th grade asking me the same question over and over. I just started guessing which word in the sentence he was talking about and every guess was wrong. I finally told him “I don’t know,” in a frustrated tone and he threatened: “I’ll kick your ass.”

It’s possible my classroom antics helped me pass difficult subjects. If I was quiet and failing, it may have garnered more attention with the possibility of failure and to repeat a grade until I could demonstrate proficiency. The teacher who threatened me with violence in front of my class might have exhibited a different layer of sadism if I was trying to be invisible while failing. He’d probably have enjoyed shining a spotlight on my existence in having me return the next year with younger classmates, who’d understand the same lessons I felt inadequate in. However, no one wanted me longer than was necessary. They’d rather pass me on to the next grade and hope I matured someday. If not, I was someone else’s problem. Empathetically, I’ve come to see how my former teachers were doing time with my presence. 

The system of a person teaching and students learning works for the vast majority of people. There will always be people like me who slip through the cracks. It’s the same comparison as labelling people either male or female at birth. To declare me a boy without any other testing seems like a negligent lie. I went to school as a male and my teachers continued the deceit. Nowhere in those health textbooks was I told of alternate developments. There were no pictures or diagrams I could compare what I had going on differing from the Tanner stages with possible outcomes.

At my most vulnerable points I reached out for knowledge, first on why there was a problem, then what it was. The words I’ve found have violated me even further. It was like trying to catch falling knives. There are words in everyday usage with secret intentions embedded within them. Once I realised that derision I could never unsee it.

The word “man” for example. It means an adult human male. Already redirected in a maze I look up ‘male’ to find numerous dictionaries define it as: an individual of the sex that is typically capable of producing small, usually motile gametes (such as sperm or spermatozoa) which fertilize the eggs of a female. Physically I cannot fit this definition.

The definition of species is “a group of living organisms consisting of similar individuals capable of exchanging genes or interbreeding.” They can either actually breed, or have the potential. According to this definition, I’m not a member of a species either. Sex exists for reproduction and nature decided I don’t get that reward. It’s equally distressing to be left out of both of our social constructs concerning gender and language. It gives me a sense that my life is intruding on the reality of others. I cannot easily define myself to fit into boxes. All I can say is I have a heartbeat and I feel. 

I got into etymology during my stay in prison. I didn’t even know what it was called back then. I started looking up words and noticing the historical references. The more I looked, the more I saw how words can share the same root. It’s fascinating to me. Coming from Greek are both parts of the word etymology. There’s etym for true and ology meaning the study of. If etym can lead me onward, then I can use the ology to better understand what’s being said to and about me. 

A word I’ve never been fond of is the word transvestite. It’s a combination of two Latin words literally meaning “across clothing.” Trans meaning across and vestire meaning clothing. I think it was my childhood exposure to that word and the negative connotations it had in the 80s. I don’t have a problem with the definition, I just don’t like the images I have associated with the word.  

Dictionary.com lists an informal definition of eunuch as an ineffective man. Their example is: a political eunuch. The medical use of eunuchoid from the same site is: an abnormal condition in males, characterized by lack of fully developed reproductive organs and the manifestation of certain female sex characteristics, as high voice or lack of facial and body hair, resulting from the absence of a normal production of male sex hormones. It’s like being victimized all over again and reminded of so many parts of my body that I’ve been dysmorphic about. Sometimes every article I find drives me lower and it feeds a perpetual cycle downward. The worse I feel, the more I look; each action feeds the other.

An article from The Atlantic published April 1, 2013 written by Kristen Kukula and Richard Wassersug talks about the historical importance of eunuchs. “Their astuteness and objectivity in assessing others’ strengths and weaknesses made them particularly effective as bureaucrats, diplomats and tacticians.” Having low testosterone was a quality for solving problems and avoiding conflict. The article went on to mention a eunuch by the name of Mohammed Khan Qajar who unified Persia and created a dynasty lasting 130 years. Khan was described by historians as being “insightful and knowledgeable” concerning “the character and feelings of others.”

The words hermaphrodite and tranny are derogatory. I’m sure there are people out there who didn’t get the memo and might be unaware. The description in the medical community has shifted toward Disorders of Sexual Development (DSD). Again, people like me are described as having a negative. My shame and embarrassment are not improved when I’m described as having a disorder”. 

What It's Like to Be Intersex

“It was like a bomb being dropped into our life.”

That’s Isaiah Ngwaru. He’s talking about the moment he and his wife, Betina, discovered their child, Tatenda, was intersex. Although they had been raising her as a boy, Tatenda had railed against the strict masculine norms in their hometown of Gutu, Zimbabwe. She wore high heels, dressed in skirts, and expressed a desire to change her gender. It wasn’t until she underwent an operation for a hernia, however, that Tatenda’s condition became medically salient to her parents—the surgeon found “something like an ovary” in the child’s body. “I just knew it. I felt it in my gut. I’m a girl,” says Tatenda in this short documentary.

“She’s Not a Boy” was co-directed by Robert Tokanel and Yuhong Pang. It is part of The Atlantic Selects, an online showcase of short documentaries from independent creators.

Intersex: Implications of Umbrella Terms in The Interest of Science.

The intersection of science and identity intensifies the complexity of the umbrella term DSD (Disorders of Sex Development)/Intersex. The interest of science to classify DSD/Intersex conditions to formulate evidence-based best practice has implications on personal identity. Fundamental to ethical decision-making in intersex is the right to choose one’s identity, which includes categorization within the umbrella term DSD/Intersex. In this lecture Dr Jennifer Markusic Wimberly, offers a bioethics lens to balance umbrella terms and individuality to normalize the differences in sex development. Jennifer is a Task Force Member on DSD/ Intersex with the American Psychological Association

Objectives

• 1. Understand the controversies surrounding the 2006 Consensus Statement on Intersex classifying individuals within three categories of Disorders of Sex Development.

• 2. Identify the historical background that has supported a classification system.

• 3. Expand the concept of fully informed consent to identity within the umbrella term DSD/Intersex.

• 4. Apply educational and research methodologies that would allow for identity and individuality to normalize differences in sex development.

Target Audience: Physicians, faculty, fellows, residents, trainees, students, health care professionals.

Educational Objectives: At the conclusion of this activity, the participant should be able to:
1) Recognize perennial and emerging bioethical problems in clinical practice, research, public health, and health policy arenas.
2) Describe competing/contrasting viewpoints concerning these bioethical problems.
3) Demonstrate increased skills in analyzing and practically handling bioethical problems in the clinical, research, public health, and health policy arenas.

Educational Method: Lecture and question-and-answer period.

Accreditation: The University of Texas Southwestern Medical Center is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

Credit Designation: The University of Texas Southwestern Medical Center designates this live activity for a maximum of 1 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. The University of Texas Southwestern Medical Center designates this activity for 1 hour(s) in medical ethics and/or professional responsibility.

Conflict of Interest: All persons in the position to control the content of an education activity are required to disclose all relevant financial relationships in any amount occurring within the past 12 months with any entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on patients. A primary mechanism to resolve identified conflicts of interest is a content review that is prior to the activity.

Off-Label Uses: Because this course is meant to educate physicians with what is currently in use and what may be available in the future, there may be “off-label” use discussed in the presentation. Speakers have been requested to inform the audience when off-label use is discussed.

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