“You don’t look Turner’s Syndrome.”
A comment I get a lot. Being mosaic I don’t show all of the classic signs and those that I do show would go unrecognised by anyone who wasn’t really familiar with the condition.
However, even today, with a condition that occurs in about 1 in 2500 female live births world wide there are still so many who have never heard of it. In fact outside of the Turner’s Syndrome groups we have or I am a part of outside of Ragdolls I believe no one in my wider circle would have ever known what Turner’s Syndrome was if it weren’t for their association with me. This is both humbling and strengthening. Humbling in the sense that after 6 years of Ragdolls existence there is still so much more awareness to spread. Strengthening in the sense that we are far from over in our mission to help TS girls and their families so we must carry on and continue to do all we can.
“How do you tell someone you have TS?”
For many girls it is a difficult one. How do you approach the subject? Especially if it’s a new romantic partner. How long to you wait to tell?
Given what I do it is usually one of the first things new people I come into contact with learn about me. It doesn’t change who I am. I am still the same person. Just as it doesn’t change any TS girl. Sure TS is fraught with challenges but in my experience there are none more capable of that than my TS sisters.
I guess my point is we have to work towards an understanding of Turner’s Syndrome, it’s varieties and it’s affects on every day life for the sufferer so that the wider world is aware of it. Don’t be afraid of it. We are here to support you in any way we can in with that in mind those who love you will do the same.
If you want to really know me or any of my TS sisters join me on my TS journey.
We have some information available on the basics of Turner’s Syndrome.
To request or to arrange a chat contact firstname.lastname@example.org