Going there part 1. Thoughts on recent events in the Turner Syndrome Society of America

I had been aware that the Turner Syndrome Society of the USA had set up a group for ‘Males with Turner Syndrome’ and changed the definition of Turner Syndrome to include males. This was not without controversy and caused a lot of debate and upset. They subsequently added this to their faq age

FAQ | Turner Syndrome

’ TS experts say males should not be diagnosed with TS but rather use their karyotype as the diagnosis. Some individuals missing their X chromosome also have both male and female organs. We are aware that doctors diagnose those individuals with Turner syndrome. Our organization does our best to accept, support and respect anyone touched by TS.

I will return to just how dangerous this paragraph is

This was not due to gender Ideology per se but to a group of mothers with boys who have had apparently had it confirmed they have an XO karyotype. In my experience these women have been problematic in spaces which are for women and families with Turner Syndrome and their behaviour toward women with Turner Syndrome can be very questionable at best .

I strongly suspect that at least one of these individuals has been appointed to a position of influence and power in the Turner Syndrome Society of the United States. All it takes is a couple of individuals to capture a group.

Before I go any further, I want to say that that any boy or man who has been found to have an XO karyotype has my full empathy and I hope they get the support and medical support they require. It would actually be more help to them for the medical community to give their specific condition its own name and definition, which would include a definition of what specific health impacts they may face. This will firstly help medic explore what health needs these men and boys have, and help address and monitor them. It will also allow these men and boys to know they are fully male. I am actually in contact with the parent of one such boy and they are conscientious and respectful of the needs of their son and of women and girls with Turner Syndrome.

Perhaps the best thing these parents can campaign for is to get a name for this particular DSD and to set up their own groups. Apart from anything else it will make it easier to find each other and organize .

There are at least two serious reasons why saying males can have Turner Syndrome is dangerous and inaccurate. Firstly Turner Syndrome specifically describes a condition that affects the female reproductive system and we face specific health issues such as bone density issues because we developed as females in utero. There is a reason we are usually seen at gynaecology departments/ women’s health centres- at least here in the UK. Saying males are affected by Turner Syndrome makes it more difficult to name the fact that some of the health issues we face arise out of our female bodies and that we need to be aware of the gynaecological issues we face. Thankfully the medical community continues to know it is a female specific condition

Secondly the statement ‘Some individuals missing their X chromosome also have both male and female organs’ is both incredibly ignorant and dangerous. This is completely untrue and medically/biologically impossible. There has not been ONE recorded case in medical literature of anyone with Turner Syndrome having both male and female secondary characteristics. This both others and misrepresents our bodies. And as for ‘We are aware that doctors diagnose those individuals with Turner syndrome’- this is complete lie as current medical practice and literature shows. It is difficult enough trying to deal with the fact that Differences of Sexual Differences (DSDS)/ Congenital Reproductive disorders which are always sex specific are being portrayed in social media discourse by some as being ‘between male and femal#’ or as forms of hermaphrodism. This applies not only to conditions like Turner Syndrome but others like Klinefelter Syndrome, MRKH and CAIS. I have seen this too many times on Twitter, It makes the lives of all of us with DSDs/ Congenital Reproductive Disorders (CRDs) more difficult and makes it more difficult to challenge ignorance about what these conditions involve. I don’t know who wrote this paragraph but they really do not know what Turner Syndrome actually involves. It perpetuates dangerous myths

Just to add – there are papers on ‘male Turner Syndrome’ but these date from the 1940s- eariy 1960s and stop within a few years after the 1959 Lancet paper that showed Turner Syndrome was caused by a missing 46th chromosomes

Finally, this is a dangerous statement because it shows a complete lack of sensitivity and understanding of the struggle every woman and girl living with Turner Syndrome to accept themselves as female or at the very least ‘female enough’. This phenomenon is well recorded in medical literature and in discussions amongst women and girls with Turner Syndrome. Any organisation concerned with Turner Syndrome should be aware of this and sensitive to this. This is especially important in the current climate with the debates around sex and gender. We are not an ‘additional’ sex (as some argue on Twitter;’. We do not shiw that ‘sex is a spectrum’ or ‘Biologically Non Binary’ (another argument I have seen on social media)– we are females with a DSD/CRD.

When I challenged the Turner Syndrome Society of the United States about their actions on a post in a Turner Syndrome group, I had a very concerning response, And individual claiming to be a hermaphrodite responded saying not only did they have Turner Syndrome and have both female and male secondary sex characteristics (specifically gonads) but the son they gave birth had both male and female gonads too. Firstly this is physically impossible (true Ovotestes Syndrome affects around 500 individuals worldwide and they are infertile). Secondly I strongly suspect this individual is an ‘Interfaker’. Sadly ‘Interfakers’ or people who claim to being either ‘Intersex' or to have a specific DSD/CRD inspite of not actually having one. As an aside this is why it is importnat to ensure the integriy of spaces for people with specific DSDS/CRDS and their families.

Both the Turner Syndrome Foundation and Turner Syndrome Global Alliance stress that Turner Syndrome is a female condition of their information pages and correctly say that Turner Syndrome affects 1 in 2000 females. It isn’t that difficult

Here is the National Health Service definition of Turner Syndrome. At all points it makes clear Turner Syndrome is a female condition. For this I am incredibly grateful (as myself and many of my friends with Turner Syndrome receive our care through the NHS!

Turner syndrome - NHS (www.nhs.uk)

One of the main priorities of any medical support group should be to ensure they give accurate and up to date medical imformation and do not perpetuate inaccuracies and myths about the medical conditio. They should alos centre the needs of those who ae genuninely impacted by the medical condition, not just medical but social, psychological and emotional.This is not ahppening here

Thoughts on ‘Chaterhouse Warren Woman’ or we were always here- just not in the way you think

In January this year a paper revealed that researchers at the Francis Crick Institute (working alongside colleagues at the University of Oxford, University of York and Oxford Archeology) had identified the oldest known remains of a woman with Turner Syndrome from around 2500 years ago in Charterhouse Warren, Somerset (and I am going to call her a woman, not an ‘individual’ as she was female). The report also discussed the discovery of three men with Klinefelter Syndrome and a person with Downs Syndrome from different periods. First prehistoric person with Turner syndrome identified from ancient DNA | Crick

Having read more about this discovery, only the skull of this young woman was discovered. She showed signs of Anaemia/ malnutrition- cribra orbitalia (as many people did in this time). She was around 18-22 years old when she died, which is even younger than the life expectancy of 25 years in Iron Age Britain. She apparently had not undergone menarche even though she had mosaic Turner Syndrome.

You can see the skull here An individual with mosaic Turner syndrome from Iron Age Somerset, UK a... | Download Scientific Diagram (researchgate.net)

Many of us with Turner Syndrome found this discovery fascinating and could not help but think about what this young woman’s life would have been like. One of the\ main things that stuck us was how what sort of quality of life she would have had with no medical treatment available. Firstly, it is important to note that of course life in Britain was very different in this period. The average life span was 25 years, testifying to the difficult nature of life and the fact that medical conditions and diseases/infections that are simple to treat today could be frequently fatal and that malnutrition was part of life.

This young woman most probably has recurrent ear infections throughout her life. Did she have any other health issues such as hypothyroidism, odema, kidney issues and any of the issues that affect us as women and girls with Turner Syndrome? Was her eyesight affected? Did this young woman have the cardiac issues associated with Turner Syndrome? How did the cognitive and spatial issues some women with Turner Syndrome have to deal with affect her life? Did she have coeliac disease (contributing to her malnutrition/Anaemia? Did the fact she had this health issue contribute to the fact she did not go through puberty? We have no indication of how she died. Did any of the health issues connected to Turner Syndrome play a role in her short life span?

Did this young woman ever wonder why her body wasn’t developing? Did she ever cry or get distressed about this? Did she face stigma and rejection because of this? She was at least buried with other people, indicating she was accepted as part of her society. She was not seen as holding a special role because she had a DSD and as far as the evidence indicates she was not an outcast.

But we have no other evidence about this young woman’s life apart from her skull. No objects were found with her remains – probably because the only thing she owned were the clothes she wore. We don’t even have any other part of her body which would have told its own story about her life and impact of Turner Syndrome and possibly her death.

We still know so little about the life of ordinary people in Iron Age Britain. We know that life was very communal and tribal. It was also hierarchical, and this young woman would not have much status. We are still finding out new things about Iron Age society, particularly about the role women played. We are still making discoveries about the roles women could play in this society. We will never fully understand what life was like for people who lived in Britain at this time. But most importantly people in Iron Age Britain would have little or no concept of what we term ‘gender’. And whatever they may have believed about sex roles, these are from a very different time and do not justify or uphold any modern beliefs. After all this is a society that probably practiced slavery and human sacrifice!

The nearest we can possibly get to understanding what she may have felt could possibly be indicated by the reports of the various mental health issues (depression, feelings of lack of self-worth) that Henry Turner found in the eight women with the DSD that bears his name in his original 1938 paper. Like this young woman, they were offered up as objects of scientific /medical interest.

Moreover and more importantly we cannot project a very particular late twentieth /early twenty first century ideology (which many people have concerns and issues with) which this project is explicitly trying to do.

It is so concerning that in the Nature paper which reported this used terms such as ‘Non binary sex’ People with DSDs, and our lives are not an ideological tool or ‘gotcha’ to be used by researchers who know nothing about the actual reality of living with these conditions. They don’t consider the impact of being used on this way or the difficulties they are creating for us.

Indeed the researchers had to admit that there was nothing out of the ordinary about the way the individuals with DSDs they analysed were treated and that ‘ they seem to have been part of their societies.” as Kyriaki Anastasiadou put it, She is so close to getting it while not getting that people with DSDs are no some ‘other’. She also said ‘It’s quite interesting to think that these people existed throughout human history’- I can’t help but feel patronised and a little troubled by these words. The existence of this young woman is not ‘quite interesting’. Why should the existence of individuals with specific conditions (with special reference to DSDs) be even remarkable? I agree it is remarkable and deeply moving to have found a woman with Turner Syndrome from over two millennia ago. The fact she made it to early adulthood, let alone be born is in and of itself remarkable (there is a 99% rate of miscarriage for Turner Syndrome in utero and apparently 15% of confirmed pregnancies that end in miscarriage are due to Turner Syndrome). I find it deeply moving this young woman managed against all the odds to live even to the age she got to.

So yes. Women and girls with Turner Syndrome have always been here, as have men and boys with Klinefelter Syndrome and people with DSDs generally. Our lives were only remarkable in in how unremarkable they were. We exist and the only thing our existence proves is that individuals with DSDs exist. As have all genetic conditions So yes, celebrate and proclaim this.