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
