Turner Syndrome Awareness Month: TS and Growth Hormone

One of the most obvious signs of Turner Syndrome is a decreased rate of growth due to a lack of response to the body’s natural production of growth hormone. The average final height of girls with TS without growth hormone supplementation is around 4’6-4’8 which is why it is technically considered a form of proportionate dwarfism according to the Little People of America website. Depending on the age of diagnoses, growth hormone treatment can begin anywhere from the age of 4-12 and is given in the form of an injection but is usually stopped by age 13 or 14 so that estrogen replacement therapy can begin which causes the growth plates to close. Growth hormone treatment can increase the final height of a girl with TS by as much five inches but usually gives an increase of two or three inches.

As my final height is only around 4’8, you can probably guess that I did not do growth hormone injections. My parents had many reasons for this, one of them being that they weren’t covered until I was 8 and by then they could only guarantee that I would gain an extra two inches which my parents didn’t feel was worth the battle of doing a daily injection, especially with my fear of needles. At the time I was extremely happy to hear I wouldn’t have to get a shot every day, but in hindsight, even gaining those two extra inches would have helped me a lot. Of course the irony that I now have to do self-injections for my Crohn’s anyway is not lost on me and growth hormone shots would have been great preparation. The fact is, I can’t go back and change the decision my parents and I made and so I’ve had to learn to accept and adapt to the challenges that being a little person poses.

Anyone well below or above the average height range will tell you that the world is not exactly made with people like us in mind. Whether that be finding clothes that fit or being able to reach things in the kitchen or grocery store or being able to fit through a doorway comfortably, these are all things that being of abnormal stature makes difficult. And that’s on top of the bullying. Growing up, I was called midget and shrimp or used as an arm or headrest more times than I care to count. My height also made many sports in PE difficult and I was often made fun of by my peers as well as the last one picked for teams which got pretty discouraging, causing it to quickly became my least favourite class.

As I got older, thankfully the bullying stopped but new challenges presented themselves such as trying to learn to drive. In order to properly see and reach the pedals, I needed pedal extenders. To save money, my dad raised the pedals for me by making blocks of wood that screwed in between the two parts of the pedal and gave me the reach I needed. On top of that, I also had to sit on a pillow so that I could see properly over the dash. All in all, it didn’t make driving the most comfortable of endeavors and, as I shared in previous post, I didn’t last long. Finding clothes that fit well is often difficult for me and I still have to get all my pants hemmed. Thankfully there are now places in the mall that do this for you at a pretty reasonable price, but growing up I always had to take them to my Grandma as my mom didn’t sew. I still have to use a stool or drag a chair over to reach stuff in the kitchen or the top of my closet. I’ve also had to learn to be comfortable with asking people for help when I can’t reach something at the grocery store. The workplace can also be challenging and may require you to ask for certain accommodations. As an administrative assistant, I require a footrest in order to help me sit comfortably as my feet dangle otherwise. Recently I also had to ask for the microwave in the lunchroom to be move down as the shelf they had it on was too high for me to safely reach (I’m sure my fellow butterflies can relate). Although it was intimidating having to reach out to my boss and ‘inconvenience’ them with my request, I reminded myself that everyone has a right to a safe and comfortable work environment. I may not be able to change my height, but I can change my attitude about it. So whenever I feel frustrated by my short stature, I remember this saying: Good things come in small packages.

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