I’m short: Let’s talk about Turner Syndrome

Carleigh Beck, Staff Writer

February is  Turner Syndrome Awareness Month. Starting a discussion about this syndrome is important because this condition is not talked about enough, yet many families are affected by it. I was diagnosed with the condition at nine years old, which is why I’m passionate about spreading awareness about it.

Growing up with Turner Syndrome, which is symbolized by a butterfly, came with difficulties. I had doctor appointments that I missed school for. Sometimes I felt like an outcast because of my condition, and I was made fun of for it.

What is Turner Syndrome?

Allow me to take you back to biology class for a minute. Chromosomes are bundles of DNA and almost everyone has 23 pairs of them. The last pair determines the sex of the person: two “X” chromosomes for females, and an “X” and a “Y” for males. Turner Syndrome occurs when a female is missing part of one or all of an “X” chromosome.

Though there are multiple traits of TS, the most common one is short stature, with the average height with no growth hormone medication being four feet, eight inches. Another common trait is ovarian failure, which causes a lack of production in estrogen, so women with TS require hormone replacement therapy. Some of the other traits include hearing loss and autoimmune diseases.

According to The Turner Syndrome Foundation, the condition is only found in 0.05% of females, and unfortunately, 98% of fetuses with TS don’t make it due to miscarriage or stillbirth. TS is the cause for 15% of all miscarriages.

My Diagnosis

My parents and doctors noticed I was much shorter than the average eight-year-old girl, so they decided to test me for conditions that could cause this. After testing me for a plethora of conditions, they tested me for TS. Through the tests, it was found that part of one of my “X” chromosomes was missing and I was diagnosed with the condition.

Because TS can cause many other medical issues, I proceeded to get more tests and ultrasounds to make sure I was in good health. Luckily, the only major concern has been issues with my thyroid.

Soon after my diagnosis, I started on a nightly injection of growth hormone that helped me grow. However, because I was diagnosed a little late, the medication only worked for so long, I only grew to be four feet and eight inches tall.

Why Awareness Month Matters

The condition has many names, such as Turner Syndrome, TS or 45 X. However, many people don’t know about it. Even if people did know about this condition, there are many misconceptions in the media.

One example of this is the “Law and Order: SVU” episode “Clocks,” which is about a 17-year-old girl with TS who goes missing. Not only did the actress not have TS, but the episode received a lot of backlash from the TS community because of how characters would describe her. Detectives described her as a “woman stuck in a child’s body,” almost to the point where they infantilize her.

The problematic episode reflects the unacceptable behaviors women with TS deal with on a regular basis. Many of my friends with TS have pointed out that people perceive them differently because of their height. This goes as far as feeling like they’re not being taken seriously as adults.

I also have experienced this. I’ve felt like I’ve been treated differently because of my height. People have called me names ranging from “mini Lego figure” to “midget.”

I recently spoke with Catherine Melman-Kenny, a friend of mine who has TS and is a recent graduate of Monmouth University. We talked about our experiences with TS, and she brought up a story from when she had to get bloodwork done.

“I walked in. . . for a blood test. As soon as I got in, one of the employees went to go grab her coworkers and said ‘come look at her, she’s so tiny and adorable,’” Melman-Kenny said.

These terms aren’t just offensive, but they can deeply affect one’s opportunities and mental health. As seen in “SVU”, people treat short women like children, not adults. This is because many tend to assume they’re shy and weak, leading short people to be overlooked.

Not only is TS Awareness Month important to let the general public know about the condition and raise the voices of those with TS, but it’s important because it helps the medical community better understand the condition.

There are not many medical professionals out there who know what TS is. Because of that, it’s difficult to find clinics that have the proper medical care for people with TS. I’m lucky because there is a great TS clinic an hour away from my home where I’ve been receiving treatment since I was diagnosed. But for many, this is not the case.

By spreading the word about TS, women with the condition will have more access to everything from opportunities in the workplace to necessary medical treatment. This will improve their quality of life and allow future generations of those with TS to thrive.