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Dancing my way through the short life: life with a little known syndrome

February happens to be the shortest month of the year, and conveniently Turner Syndrome Awareness Month. Turner Syndrome (TS) happens when a female is born missing an X chromosome, or part of one, affecting roughly one in every 2,500 girls.

The most prominent physical feature of TS is the distinct short stature, as most women with TS are under five-foot, and sometimes a webbed neck. Testing for TS in done through a karyotype (chromosome map) analyzing the conditions of chromosomes.

I was diagnosed when I was eight years old and moved to Ottawa, with the mosaic type, meaning I was only missing part of my last X chromosome, not the whole thing. I finally had answers after years of doctors in Calgary saying I would grow when I was older. No suspicions either of anything from the nurses at the hospital in England where I was born – despite having been held back in special care because I was so tiny. I spent six years of my life, until I was nearly 14, taking hormone injections so that I would reach my final height, which is a normal period for TS girls to be taking hormones as their bone age catches up with their chronological age. No, I am not a dwarf, midget or hobbit.

My height has presented many challenges, from being questioned at bars to struggling to find jobs because I look younger than I actually am.

Many girls are lucky to be diagnosed at birth or before they are born and can reach a nearly average height, while some are diagnosed as teens, though the average age of diagnosis is nine years old.

Most girls with TS, after taking growth hormones, take estrogen replacements to be able to develop properly and have periods regularly. Women with TS are also unable to have children due to non-functioning or non-existent ovaries, which can often be a touchy subject. Don’t tell a women with TS you’re sorry – we don’t want sympathy and that’s not going to make us feel better, even someone like myself who would have adopted anyways. Some mosaic women may be lucky, but it is riskier.

I have also been tested for a list of other health problems that I am lucky to not have to deal with, such as kidney defects and heart problems, which need to be monitored every few years, as well as hearing problems and hypothyroidism.

Hospital visits thankfully are becoming less frequent as I get older. Along with a short stature and infertility, TS also brings about learning difficulties, including ADD, slow processing and visual/spatial problems, which affected me in math and are common in most girls with TS.

School may have been a struggle, but I had an amazing support system in high school and found one here at Trent as well, trying never to let teachers who doubted me affect me. Many girls with TS can also have higher than average language, reading, writing and communication skills.

There are a lot of misconceptions about TS – socially, medically and in the media – as a lot of people are unfortunately not familiar with it. TS is more than just being petite, as some people think.

It may present challenges at times, but it is part of who I am. I am infinitely grateful for the wonderful women it’s lead me to meet during my two years of adventures at camp for girls with TS, as well as everything it’s taught me about myself and life.

Never doubt a girl with TS – they are often the most amazing, kind-hearted, strongest women you will ever have the honour of meeting. My hope is that one day, TS will be something more widely recognized and understood.

Short happens!

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