How I have managed my diagnosis

As you may have already read, I have been diagnosed since birth. I have been able to as a result of this, process the information of what it means and gain my own knowledge and understanding of Turners.

During childhood my parents have never sugar coated the information and always supported me throughout, they have always allowed me to lead a life that I would if I had no diagnosis. This has allowed the people around me to not treat me any differently, by doing so I have never felt suffocated by anything I have been allowed to grow as I would.

In school my parents used to send me with the yellow book I had all about Turner syndrome to help them understand me as a person,  this has allowed me to receive support in the right areas academically, even though I have still had to work hard to get through educational areas. I went through school being bullied at various stages as most children can experience one time or another because i never had big friendship groups or was never in the popular crowd being shy.

Through the years I have gone through various stages, up until 14 I understood I had a diagnosis and what it involved day to day. I got a major opportunity thanks to my parents of going to a summer camp in 2004, this was an amazing time to get others like me. On this holiday there were 10 of us which got to chat and complete activities together and just generally get to know each other. It gave me a real thirst for my diagnosis as each and every girl were so supportive and so similar personality wise it showed me people like me that understood me without any judgement or questions, I felt like I fit in with a group situation for a change. From this experience I created my first website and started exploring the TSSS UK and Child Growth Foundation pages to gain more insight and meet others.

From the pages I began emailing and chatting to a couple of people and getting some forum input into my website to chat to others around the world. This helped me to really embrace who I was, feel accepted and also feel that I wasn’t alone as more people than I realized were out there exactly like me. I continued to grow a real positive outlook on Turners and wanted to do further work to spread the word to others who may have felt hearing their own diagnosis like I did, so in 2008 I launched a couple of videos on YouTube, this received positive feedback.

Over the years I have attended a number of TSSS conferences in London which have been very useful to chat about various topics and meet old and new friends.

The world of Facebook began and eventually I discovered groups under TSSS UK, which again I have been very fortunate in meeting various people locally from who are all like minded. This has continued my very positive growth towards how I percieve Turners. I have been able to develop a widely expanding friendship group that is full of people who each support and encourage each other and who understand various stages throughout life having had a wide range of experience between them.

My journey is still occuring however, so far it has made me who I am and got me to where I am today. I am not going to say that there are days that I don’t struggle with be it scoial aspects of life, learning, or fertility (which I go into in another page) but I try and maintain a positive stance like I have experienced and been bought up with.