Welcome to the international Triple-X Family network.
What is Triple-X? In short, it is a genetic variation which is formed by a third x-chromosome (47,xxx). It is called a Trisomy. In this world there are many kinds of Trisomies, variations of the chromosomes. This project is about one of the Trisomies, that just affects females. What we are focusing on is Trisomy X – also called: 47,xxx, Triple-X, Triplo-X or Triple-x syndrome.
Studies say every 1:1000 women born on this planet has it. Which makes it a “rare disease”. So far only about 10% of affected women are diagnosed. Which in total sums up to not that small numbers like appr. 160,000 women in the US, 40,000 in Germany, and many more in other countries .
This low rate of diagnoses is because Triple-X shows a very diverse, colourful spectrum of being and perceiving the world in thousands of different ways with more or less similarities to each and every other Triple-X female. And, it is sort of “invisible” because “Trixys” (this is how some Triple-X-girls nickname themselves) don’t have too outstanding visible features, like for example people with Trisomy 21 – also known as “Down Syndrome”.
This network was created in 2019 by a Triple-X-family in Germany to connect and compile families and groups and their real life experience about how Triple-X-girls and – women and their families master their lives with this highly flexible rare syndrome.
Here we created a platform for sharing first hand experience, stories, studies, initiatives, findings about Triple-X, linking existing projects, information and support worldwide! This is our quest.
We in particular don’t want to focus on pure medical aspects about this topic, but instead want to focus on the human being: What moves a Triple-X infant, teenager or grown up? What problems do they have and how can we all approach them together? Finding strategies to support, even if the doctors one meets have no knowledge about it. There is no cure for the syndrome. But there are ideas, strategies, treatment plans and a lot of first hand experience to make days and lives of Triple-X families better every day. And here we bring them all together, to have easier access and inspiration.
We have compiled a list of local contact groups. There are also a few good books, some YouTube videos and conferences on that topic. We also have collected some studies.
There is so much we all could support each other with. Not necessarily with money (though some will be needed to pay for secure servers and spreading information to schools etc.) but with sharing all our first hand experience and communicate with each other wherever we are and bridging distance and language barriers by modern technology (good translation tools are magical and video conferences are easy to set up nowadays). If you don’t know how to use these tools, we can teach you how.
We appreciate everyone who wants to join us at this project and build the solid, widespread network globally together.
For a full list our topics, please go to the overview.