Register for the 2026 TSSUS National Turner Syndrome Convention

Before I was even born, my life was questioned. My parents were told by an OB/GYN that I wasn’t going to make it, that my body wasn’t developing “normally,” that my chances of survival were low, and that termination was the safest option. Before I had a name, before I took my first breath, my life was already seen as a problem to erase. But God had already decided I was meant to be here. Even when doctors doubted my survival, God never did. Living with Turner syndrome (TS) ha

I was diagnosed with mosaic Turner syndrome at almost 26 years old (I am about to turn 30). Since then, it has been a very up and down journey emotionally. All the doctor’s visits and information were initially overwhelming, but I am grateful I have minimal symptoms. The main issues I have to monitor are my bone health and blood sugar, along with making sure my heart continues to stay in good shape. My husband, family, and friends have been very supportive, which I am so than

This Turner Syndrome Awareness Month, I want to share a little of my story to hopefully encourage fellow butterflies and their loved ones. I was diagnosed with Turner syndrome at 14, after years of struggling with feeling different from my peers. I wasn’t growing or changing the way other girls my age were, and I knew something wasn’t right. I began searching online for answers to why this was happening. I came across Turner Syndrome and immediately knew I needed to ask my do

Hello TS community! My name is Maria do Carmo. I’m from Brazil and I am turning 32 this February. For me, Turner syndrome (TS) is more than a diagnosis because it has shaped the way I interact with the world; the bullying I suffered in elementary and middle school, the treatment, the challenges, and my achievements. My path was not easy. I was diagnosed when I was 5 years old and was on growth hormone until I was 15. Dealing with being short is difficult for me ( I am 4'9 "or

Growing up, I was always different, but nobody understood what was going on with me. I wasn't growing. I struggled with math, fine motor skills, and was falling behind socially due to difficulty understanding social cues. I wasn't diagnosed with Turner syndrome (TS) until I was about 11 years old. My family moved and I was seen by a new pediatrician who noticed that everyone else in my family was tall. That led to getting a karyotype test done, which revealed my Turner syndro

My journey navigating my diagnosis of Turner syndrome (TS) started around the time I was in kindergarten. My heart defects, amongst some of the other classic features like the webbed neck, had led to me to being diagnosed shortly after birth. There were many appointments and many times of unpleasant bloodwork. By the time I was in kindergarten, I had started getting annoyed by the medical visits and bloodwork. I loathed bloodwork! I vented to one of my friends during lunch af

I was diagnosed with Turner syndrome (TS) when I was 12 years old. At the time, I was confused and scared, even if I didn’t fully know how to put those feelings into words. I remember feeling different from other kids and not always understanding why my body didn’t develop the same way. Getting the diagnosis answered some questions, but it also brought new ones and a lot of emotions I wasn’t prepared for. Growing up with TS wasn’t easy. There were doctor’s appointments, treat

Miami Beach, April 1955   The doctor handed the swaddled infant back to her mother, noting the puffiness in the tiny hands and feet. He'd seen it before. He had his suspicions, but for the moment, he just said, "She's a fine little bugger. Take her home and love her."   And so, Barbara's mother did.   Her older brother (almost three years old at the time) wasn’t exactly thrilled about his little sister at first but they do have a good relationship these days.   For six years,

I was diagnosed with mosaic Turner syndrome at the age of 19 by my uncle, who is an OB-GYN. Earlier in my life, I was diagnosed in 2nd grade with a visual processing learning disability. As a senior in high school, I struggled with mental health challenges related to stress about college, heartbreak from my first relationship, and being on the wrong medication at the time. When I received my Turner syndrome diagnosis, it felt as though the missing pieces of my life finally ca

Ruth. Her name means compassion, friendship, and steadfast love. We chose it because it felt gentle yet strong. A name rooted in faith, loyalty, and quiet courage. We had no idea at the time just how perfectly it would fit our girl. At our very first ultrasound, my husband Bryce and I learned that Ruth had Turner syndrome. Along with that diagnosis came words no parent is prepared to hear; that she had, at most, a 3% chance of survival. In that moment, everything changed. Fea

I was extremely sick when I was little. I was born in 1992, and no one could explain why I was so sick and I was diagnosed with failure to thrive. Fortunately, I recovered but no one was sure why. Growing up, I was always much shorter than my two sisters and looked very young. I also had trouble in school as I was diagnosed with dyslexia, but I was able to graduate college and law school, pass two bar exams, and go on to become a practicing attorney. Fast forward to 2024 and

Hi, I’m Morgan Crumrine, and I joined the Turner Syndrome Society of the United States (TSSUS) in September as the conference coordinator. I am excited to be part of this incredible organization and to help bring together the people, planning, and purpose behind the national conference. I’ve always loved being a part of something larger than myself by providing work that turns ideas into meaningful experiences. I graduated from Texas A&M University with a degree in Agricultur