When Rebekah Schietroma stopped growing around age eight or nine, her parents knew something wasn’t quite right.

“By the time I was 12 or 13 I still looked like I was eight or nine, I looked like a little girl,” Rebekah, 26, of Warrnambool, said.

“I was tall and then I went off-the-charts short.

“We didn’t know what was going on for a long time.”

At first doctors just dismissed it as just being short in stature even though most people in her family were tall.

“They just thought I was short and a late bloomer,” Rebekah said.

At 12 she was finally diagnosed with Turner’s Syndrome. “My whole world just crashed,” Rebekah said. 

“I didn’t know what Turner’s Syndrome was. I was so scared.”

Being short is one of the main characteristics of the random genetic disorder, and at 1.5 metres (or four-foot eight), Rebekah had then reached the average height for an adult with Turner’s Syndrome.

Females have two X-chromosomes but in those with Turner’s Syndrome there may only be one or it may be partially missing. 

“In my case I’m missing an X-chromosome, but I’m really mild so obviously a lot of cells aren’t missing,” she said.

The effects and severity of the condition vary widely and affects about one in 2500 female babies born.  

Rebekah said only about two per cent of those with the condition survive to term because of miscarriage linked to heart problems or abortion. 

“It’s a very hard thing to talk about and a lot of us don’t want to come out into the public,” she said. “Everyone wants to be normal so you don’t want to talk about it. And people will react.”

At 26, Rebekah now feels empowered to tell her story and raise awareness about Turner’s Syndrome.

“A lot of my friends don’t know I have this. A lot of people don’t know. It’s such a personal thing you’ve got to choose who you tell,” she said.

“But I’m choosing to put this out there because so many girls need answers.”

For all that doctors and scientist do know, there is a lot that they don’t know, she said, and hopes that by telling her story it will encourage more research and more awareness in the medical community.

“It’s classed as a genetic disorder but they don’t know what causes it,” she said. “It’s chromosomal disorder so it just kind of happens. It’s just a freak of nature basically.

“It’s a tree with a million branches. There’s so many things you have to deal with.”

The first thing doctors did was start Rebekah on a three-year course of growth hormone that she had to inject every night.

“It worked because I’m now about five-foot two, nearly five foot three (about 1.6m), which is super tall because there are very few girls with Turner’s Syndrome that are that tall,” she said.

“I was lucky that when I was first diagnosed I was in a very diverse school. There were a lot of other girls that were shorter just because their families were shorter. I just hung around with them and they just accepted me for who I was. They didn’t know anything.”

But when it came time for school camp, her classmates were naturally curious about the injections she had to take. “It was scary having to stab yourself every night. As hard as it is, that was probably the scariest thing and I’m so glad it’s over. You kind of get braver for it. It makes you super strong,” she said.

“I really learnt to accept myself even though I’m genetically flawed.”

Rebekah grew up feeling different and having to deal with body image issue from being short. “A lot of girls struggle with that because people have to tell you. They think you don’t know that you’re short,” she said.

“I have younger sisters and I’d always get mistaken for the youngest even though they’re quite a bit younger than me.

“I’m petite and people still think I’m a teenager.” But now that she is getting older she’s “kinda thankful”, like most of us would be, to be mistaken for someone younger.

Looking younger is a common trait of Turner’s Syndrome but Rebekah said that like her, it was quite common for many girls not to have any noticeable physical traits.

Others might be born with webbed necks, facial or finger deformities or their ears sit low on their faces.

Heart, hearing and thyroid problems, diabetes, blood pressure, osteoporosis and learning difficulties are often associated with Turner’s Syndrome. “I have to make sure I’m exercising and stay healthy,” she said.

“You do limit yourself, and people do limit you. I’ve been limited many times but now I’m at the stage of my life where I don’t want to give up.”

She said girls with Turner’s Syndrome were more prone to anxiety and depression and they struggle with concentration and spacial awareness. “It’s very hard to judge the distance of things. Sometimes when I walk I crash into things,” she said.

Learning to drive is a challenge for many girls with Turner’s Syndrome and Rebecca is close to finally getting her licence.

Getting her licence has taken a bit longer than most because she has spent a lot of time volunteering and living overseas. She taught English to Arab students and worked with children in Jordan, and then moved to Los Angeles for a year where she worked with models during the high-pressure world of LA fashion week. 

She even got to do a bit of modelling herself while in LA. “I helped dress models because their outfits were so hard to put on quickly, they have seconds literally. They have designers yelling at them.”

Like many girls with Turner’s Syndrome, Rebekah has a bright and bubbly personality and is a social butterfly.

The purple T-shirt she wears features a butterfly with the words ‘A butterfly can’t see its wings, but the world can’ – a message of hope for all those with Turner’s Syndrome.

“A lot of girls are positive, have a Christian faith because you have to go through so much and you have to hold on to something with a foundation,” she said.

“It’s been a blessing in disguise. It’s made me who I am but it doesn’t define me. I very much have a normal life but also crave some normality. Some things that are so normal for other people I haven’t experienced and won’t be able to.

“It’s a really unique thing to go through. I really want to stress the value of the girls who have to go through this because we are not very valued.”

As well as raise awareness, Rebekah wants to reduce the stigma associated with the condition.

“It needs representation. It needs a face put to it. And it needs the right awareness. It’s rare but it’s not as rare as some. Some rarer conditions are getting much more awareness,” she said.

There were many misconceptions around Turner’s syndrome, partly because it is described as a syndrome and also because of the way it has been portrayed on TV and in horror movies, she said.

Even the way genetics was taught in science class at school was hurtful.

“There was an episode of Law and Order SVU, it was my favourite show, and they portrayed a girl with Turner’s Syndrome. She was short and looked like a little girl but they made it like she was crazy and that she was with the wrong kind of guys. 

“They made it look like us girls only attract freaks basically because we look like little girls which is totally not true. You might be shorter and look younger but you’re not going to look like a little girl.”

The first thing she did when she was diagnosed was do what the doctors tell you not to – she googled. “Googling it will freak you out. Never Google it. We did and we had heart attacks,” she said.

The internet, though, has since become a positive way to find support and more accurate information is easier to find these days such as at www.turnersyndrome.org.au.

”It’s really cool to know you’re not alone. That’s where the internet is such a great thing. I have so many friends that I talk to that I’ve never met.”