Register for the 2026 TSSUS National Turner Syndrome Conference

Ok, get ready because I’m basically going to share my entire life story. As I’m sure many of you know, girls with Turner syndrome (TS) can be extremely different; no two are exactly alike. Thus, I can only attest to my personal experience as just one of the many people with said diagnosis. When thinking of all the characteristics and potential medical issues that can come with TS, I like to think that my case is like “having a little bit of everything”. By this, I mean that I

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 wa

My name is Rebekah Westergaard, and I’m 34 years old. I was diagnosed with Turner syndrome (TS) before I was born. While it has shaped parts of my life, it has never defined my worth or limited what I believe is possible for me. I was born in the north, raised in Florida, and now live in Ohio. I’m the youngest of three siblings—and the only girl—which taught me early on how to be resilient. I grew up going to Disney and am still a proud Disney nerd. I work as a Direct Support

Ever since I was a little girl, I knew exactly what I wanted to do when I grew up. I wanted to be a nurse, and above all, I wanted to be a mom. All of this changed when at 14, I was diagnosed with Turner syndrome. When I found out I would not be able to have biological children as a result, my world was turned upside down. I struggled with the idea of being “different” from my peers, but also the uncertainty of what my future would look like, and if I would ever be able to ha

Flash back to 1999 when I was born a healthy baby girl and my parents had no idea what was in store for them. It started with constant ear infections at just three months old, which started the series of multiple sets of tubes. Then they noticed the cleft palate and the vision loss at five years old. Then at seven years old came the big diagnosis! I wasn’t on the height or weight chart at all, and genetics confirmed it was Turner syndrome. Fortunately to have been caught rela

February means a lot more to me than any other month - not only because it’s Turner Syndrome Awareness Month, but also because it’s also my birthday month. Little did I know, a little over a year ago that it would become even more special to me: my fiancé’s birthday is also in February, 8 days after mine to be exact! When I was younger no one ever paid attention to me because I was just a short kid. A short kid who many people, including an elementary school teacher and princ

I never felt much different from other kids, my life was just a bit more clinical than most. With Turner syndrome, you get very used to needles and doctors. From when I was 7 or 8 to when I was 13, I had nightly growth hormone shots so I could grow to eventually 5’4, which is amazing. I never minded going to the doctor or doing the tests much, it was interesting to me. I just hated getting my blood drawn. It was never fun, so I liked to close my eyes, just breathe, and sit ex

My daughter Sadie was diagnosed with mosaic Turner syndrome (TS) at the age of 9, and in that moment, everything suddenly started to make sense. From the beginning, Sadie has faced challenges that most children never encounter. She was born prematurely, and while we never knew it at the time, Turner syndrome was the hidden thread behind her early struggles. Childhood illnesses like recurring kidney and ear infections were just “things kids get” until her body began to tell a

Hi, I’m Morgan. I’m 27 years old and I was diagnosed with Turner syndrome (TS) when I was 15 years old. When I was diagnosed, I went through tons of tests including echocardiograms, MRI, ultrasounds, and bloodwork to make sure I was healthy. Luckily, I was. Like many women with TS, I was told to use growth hormones daily for a couple years to help me get taller. At first, I feared how this would affect my life and relationships. Both my parents and my doctors assured me that

I have mosaic Turner syndrome and was diagnosed at age 15, after years of irregular periods and some concerning lab results. At the time, my OB/GYN feared something far more serious - possibly ovarian cancer. So, when Turner syndrome became the diagnosis, it was actually a huge relief!  Still, I wish I had known earlier. Early diagnosis is key with Turner syndrome. It gives you answers, access to care, and - most importantly -  the knowledge to move forward with clarity and p