A 16-Year-Old On Living With Turner Syndrome

Posted on November 15, 2016 in Health and Life, My Story

By Nicole Whittaker:

I was diagnosed with Turner Syndrome at 14. Sounds scary right? Put syndrome after anything and it sounds pretty frightening. I remember sitting at the doctor’s and being told. I wanted to cry but I knew that whatever it was, it was nothing that was going to stop me from doing what I want to do and I knew my family and friends would help me through it all.

It’s actually only been two years since I was diagnosed, I’m 16 now.

So what is Turner Syndrome?

Turner Syndrome is a genetic condition cause by a missing or damaged X chromosome (boys have an X and a Y chromosome and girls have two X chromosomes, but TS can only affect girls). The main features of TS are short stature and infertility. However, with today’s medication and technology, women with TS can reach average height with growth hormone (if diagnosed young) and I’m always told that there is adoption and that IVF is advancing so fast, who knows what they’ll be when I’m ready to have children. Probably being a bit optimistic but obviously I’m not so worried about having children at 16. I just want to survive high school.

For a lot of girls with TS life can be very hard because girls with TS can have heart issues such as a heart murmur, kidney issues and can have some features that affect appearance. these can include low set hairline, webbed neck, broad shoulders and chest.

We can struggle with learning difficulties, hearing problems and we may need glasses for long or shortsightedness.

Despite all this, most of us are happy and confident and try hard to raise awareness because it is not very well known and it affects 1 in 1200 women.

A message for girls with TS:

Please do not let TS stop you from following your dreams. You can get there! Don’t lose heart that you can’t be a mother like I said IVF technology is advancing so fast and also there are other ways to make your mark in the world.

For those with a family member or a friend with TS:

Some girls with TS don’t like to talk about it and some do. If they’ve told you about it they will tell you how you can help them if they don’t you can ask I’m sure.