Register for the 2026 TSSUS National Turner Syndrome Conference

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

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 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

Hi! My name is Jennifer. I was born with Turner syndrome in 1972, but that did not stop me! I did not have any obvious signs of TS at birth. I was much smaller than kids my age. Eye hand coordination and spatial awareness was a challenge for me. I did well in school and enjoyed reading and writing. I was diagnosed at 16, when I did not physically mature as expected. I felt different at first. It is difficult to receive a diagnosis at any age but being diagnosed as a teenager

Childhood: Early Awareness and Planning.   From the moment I was born, my parents knew my Turner syndrome(TS) diagnosis would mean lifelong monitoring -  that my needs would evolve as I grew. They were right. What no one fully explained was how much those needs would change, or how deeply each stage of life would reshape my understanding of myself. As a child, care revolved around growth and heart health. My parents coordinated appointments, tracked milestones, and balanced a

Turner syndrome (TS) is a genetic condition that affects females, caused by a partial or complete absence of one of the X chromosomes. It...

Hi, my name is Emily! My story starts right at the beginning, with my birth in 1975. As my mother tells the story, a very observant...

Vocational Rehabilitation (VR) Services can be valuable support for people with Turner syndrome (TS) who may face challenges related to...

Nonverbal Learning Disorder (NVLD) is often described as an “invisible disability.” While people with NVLD may excel in verbal...

Hi, my name is Brittany Hinsey and I just wanted to give my insights on my experience with the Turner Syndrome Society’s conference....

Back-to-school season can be exciting but also challenging—especially for children with Turner syndrome (TS). While every child is...