Recently I had the pleasure of connecting with the University of Warsaw via skype with the opportunity to share my story. It is amazing how modern technology allows us to keep in contact and share our experiences.
With that in mind I thought I would take the opportunity to share what I discussed in the hopes that it can reach even further.
I was diagnosed with Turner’s Syndrome shortly after birth due to a swollen right foot and swollen right hand. With this early diagnosis I have grown up always knowing I am Turners. The youngest of four children I am lucky to be surrounded by a supportive family, something that is so important in the lives of TS girls.
My parents made the decision to tackle each stage of the condition at a time – from early infancy, to childhood, puberty and beyond to adulthood.
A lot of the Turner’s girls I come into contact with describe feeling different or at least self conscious of their differences. Some of the complications such as the heart, kidneys or infertility are unfortunate but I always stress that genetics are what make you who you are. It is much like eye colour or hair colour.
Having an early diagnosis helped me to shape this view of the condition. It is extremely important for me to be on hand for Turner’s girls and women who are diagnosed a little later because it can be a frightening experience and a lot of information to process.
Like many Turner’s women I have a heart issue. Born with discoordination of the heart valve I attend cardiology specialists every two years. My most recent appointment was in January of this year. I had surgery on a narrowing artery as a child but even with that I am a happy, otherwise healthy person.
I was told at age 10 when sex classes were being carried out in school that I wouldn’t be able have a family naturally. It is one of the biggest challenges that face women with Turners Syndrome but it is by no means an impossible dream.
There are many options out there. The word ‘infertility’ causes a great deal of anxiety in Turner’s Syndrome women who wish to have a family so I always urge them to look at the bigger picture of what is possible. In our modern world the face of the family unit is changing in remarkable ways.
It was a common when I was a child to assume that girls with Turner’s Syndrome would require special education. Thankfully my parents argued with the school board so that I could attend the same school as my elder brothers and throughout my education I excelled. I did require some extra patience in mathematics but many non Turner’s Syndrome people do too. In recent years the idea of Turners Syndrome as a spectrum seems to be coming more to light. This helps to better provide for Turner’s girls who do have extra support needs. However, from personal experience I can say that the Turner’ girls I have met are some of the brightest and most creative people I have known.
After school I went on to Aberdeen University beginning in medicine and finding myself drawn to research. Always a creative person, I currently work as an author but when I left University I wanted to take what life and academia had taught me and apply it where it could make the most difference. So Ragdolls charity was born to give advice, support and raise awareness of Turner’s Syndrome as much as possible. Unfortunately, despite occurring in 1 in about 2500 girls world wide there are still so many who haven’t heard of it. With each new person learning about it we are changing that.
If you have any questions or would like to discuss any of these issues further please call our TS line or arrange a call back by emailing firstname.lastname@example.org