Get Out There and Show the World What You Can Do! - by Olivia Zeni

Nice to meet you! I am Olivia Zeni, and I was diagnosed with Turner syndrome (TS) when I was a kid. I then went under the care of a pediatric endocrinologist for quite a while. It isn’t that easy to make peace with such a diagnosis. As a child, you don’t completely understand the full breadth of what it means to have TS. The most important thing at that age is your height compared to your classmates!

One thing I will say, related to growth hormone therapy is that my mother was reluctant to start it at first, until she met some others at the TSSUS Turner Syndrome Conference one year. They mentioned that they would definitely take the therapy if they could, because since it wasn’t available to them, their growth was so decreased that it is hard for them to drive due to their height. For those who are reading this, I would agree – though I did undergo growth hormone treatment, I am just a little over 4’9. If I was asked what I would choose, I would also choose to take growth hormone myself as well.

What makes me a particularly unique girl with TS isn’t exactly related to Turner syndrome itself. In 2022, I was working a summer job at a daycare between college semesters. My parents were away in North Carolina, looking into housing options since my brother and I were both students at High Point University there. Due to this, we only had one vehicle between the two of us, so my brother needed to pick me up. I went to cross the street to a nearby Starbucks to wait for my brother after my shift, rather than waiting in the daycare itself. I never expected to go head-to-head with a mid-size pickup, however, that I did.

Luckily, the driver immediately called EMS, and I was brought to a nearby hospital (though I am told that they weren’t sure whether to send me to pediatric or adult at first, but since I had my ID on me, they did send me to adult).

After recovering from a catastrophic-level TBI (Traumatic Brain Injury) for a while, the neurologist I then saw noticed water buildup on the brain (formally called hydrocephalus). After a shunt placement (which is like an internal tube from the head to the stomach), I continued a bit of recovery. The most unexpected result of all of this is the complete lack of specific memory previous to the shunt placement. The first thing I truly remember is when I woke up from the surgery (and yes, my head hurt like crazy).

After all of this, I am now a junior in college, pursuing a B.S. Biology degree. Though I am not exactly the same person I was, I still would like to further my education, so I can have a job that I am passionate about.

What would I say to someone who is newly diagnosed with TS? Don’t let anything stop you. Many times, the only reason you can’t do something is because you are not willing to take the risk or do the hard work. Of course, don’t go too far, but for many things, it will never happen because you never tried. So, get out there, and show the world what you can do!