How did your diagnosis come about?
I was diagnosed by an intern at 14! it was because i had gained a lot of weight from my thyroid failing and i hadn’t hit puberty.
What was it like figuring out what it means to live with Turner Syndrome?
figuring it out was complicated, i had to set up treatment plans, get a lot of tests done, and meet with several specialists. it took a huge emotional toll.
How does it show up in your day-to-day life?
it shows up in my daily life through injections for my growth) medications, and weekly appointments and therapy. i also experience issues with height (4’10), hormone management, and other heath conditions that are common with ts.
What has the emotional or mental side of it been like for you?
Overall, it has taken a very large toll on my mental health. this is mainly due to constant tests, procedures, and appointments. however, the biggest thing for me was loosing my fertility. turners has allowed to meet some of my best friends though! it’s very tough at times. turners also caused an increased risk for neurodivergence, anxiety, and depression.
Has the statistical rarity of surviving to birth with Turner Syndrome been something you’ve thought about — and if so, what has that meant to you?
I would say I have a little bit, it’s kinda weird knowing that i’m here walking around with less genetic material than most people. It’s also very interesting to me how low the statistic is and makes it just surreal.
What would you want people to understand about Turner Syndrome?
I would want people to just know about the condition in general because it’s not commonly taught or understood in regular biology classes or in med school unlike other genetic disorders. along what that, i wish people knew how it is more complicated than it seems and that there are multiple different versions of it (classic and mosaic)