Forums » Smalltalk » AMA Life With Turner's Syndrome

Hi, hi! The name's Gab and I have Turner's Syndrome! I did an AMA about this during the Living Library a couple(?) years back but I wanted to do this again for anyone new here!

Anyways, some info about me and my condition!

1. What even is Tuner's Syndrome? It's basically a genetic condition where one of my x chromosomes has either sections missing or is missing entirely! Fun fact, it only affects AFAB people because of this!

2. When was I diagnosed? I was actually diagnosed pretty young, I believe around 2 years old?

3. What does Turner's Syndrome even do? Because it affects my x chromosomes, my body isn't naturally able to produce estrogen or progesterone, so I've had to take medications for that. It also means I'm fairly short (only 4'11", but that can also be contributed to my mom and her Filipino heritage lol)

Anyways, ask away!

Hi Gab! Thank you for sharing a little about your condition and teaching me something I didn't know! (We are around the same height, btw!)

• What are some ways that living with Turner's Syndrome impacts your daily life?
• Is there anything that others or friends can do to be more mindful of or helpful with when it comes to specific needs or difficulties? (For example, I have ADHD and sometimes need to ask people to be crispy amounts of specific about what they're asking to/from me.)

I'm not really familiar with Turner's Syndrome at all, so I'm not sure if the questions apply, but I always do wonder!

Oooo, nice! Always fun to meet someone who's part of the short people club lol

And it's all good, it's not a very common disorder, that's why I like to talk about it haha

For how it's impacted me and my daily life, I've had to go see a doctor (specifically an endocrinologist) more often than most people, especially as I was hitting puberty so they could track how I was developing. I also don't know if it was because of Turner's specifically, but I remember I had struggled with putting on enough weight for a while. Other than that, now I really only need to take a few medications (Estrogen patches and Progesterone specifically) to help regulate my hormones and stuff. I also have to take a medicine to help with my thyroid, which is also a consequence of Turner's Syndrome. Oh! And for a long while, I also had to take growth hormones in the form of shots to help me get to the height I am today. I could've ended up shorter than I am now if I didn't.

As for anything people need to be mindful of, there really isn't much! Other than needing to take more medicine than the average adult my age, I don't have much hindering me. I was actually super into looking into my disorder and talking about it whenever I got the chance to for a while when I was in high school lol.

What's the one thing that surprised you the most about Turner's Syndrome?

I would honestly say the fact that I was diagnosed so young! Because it generally affects the puberty of AFAB people (since the x chromosome is messed up, it messes with estrogen and progesterone development, which is critical to AFAB puberty) those with it generally don't get diagnosed until their teens/adult life for obvious reasons.

Do you know how they caught it so young? Was there a tell, or was it just like an accidental blood test?

Well, from what I remember from what my mom told me, I was diagnosed so young mostly because I was so small. I was wayyyyy below the height of most kids my age. They decided to do some tests and that's how I got the diagnosis.

That makes sense! Thanks for your answer