As part of its My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their parents and caregivers. In this post, Rita, a woman in her 80s who was diagnosed with TS at 17 years old, shares her story and how she feels so lucky, even while having faced decades of medical and personal challenges.
“I must be one of the oldest living patients with TS. I have lived a long life with TS, with relatively few medical issues, and I feel so very lucky. To the younger people with TS, I would say to never give up. You’re OK … just hang in there.”
Rita
Note: Everyone’s journey with TS is different. Please consult with your health care provider(s) for guidance regarding your health issues and appropriate treatments.
Growing Up on a Farm
It was not always easy growing up on a farm in Iowa. My parents were very frugal. One time, my school principal asked me if there was something wrong. I told them I was just concerned about getting a job.
As a child, I was very small. I was scared to go down the slide, and I never really learned to ride a bike because of my balance issues. I tried, but I couldn’t stay upright for too long, so I never got very proficient at it. I remember things like that about growing up. I always wanted to be a “big girl.”
When I was five years old, my father said he didn’t want me to start school yet. My sister, who is two years younger than me, was going to start school later, and he said it would be more economical to drive us both at the same time. I remember thinking, “well, if you had said ‘we want to let you grow up a little more before we send you to school, because you’re kind of small and frail,’” I think I would have understood better.
My Turner Syndrome Diagnosis
I was diagnosed with TS when I was about 17 by a gynecologist at a university hospital. My parents and I were both very glad to know what the problem was. I hadn’t begun menstruating yet or had any breast development. I remember wearing a padded bra to look more like the other girls. I was always short, but I finally reached 4’11”. I didn’t tell anyone about my diagnosis, except for my parents and my immediate family.
I don’t know if growth hormone therapy (GHT) was in use then, but at that point I would have been too old for this treatment. Instead, they placed me on estrogen replacement therapy (ERT). Now things are very different, and there are so many more treatments available. I feel so lucky to have been diagnosed at that age, back in 1959. I was born in 1942, only four years after Dr. Turner discovered the condition!
Rita’s high school graduation photo, 1961
Transitioning to Adult Life
After high school, I attended college in Wisconsin for a year, but my grades weren’t good enough. My mom was pretty upset, and I can’t really blame her. She had gone to bat to get me to go there because she felt I needed an extra push. She thought that a college education might help me get a job.
I did not really get the job I wanted after graduating from college. I was interested in special education, and there were a lot of teachers colleges and teachers where I lived. I did get a job at a Catholic school for a year.
Then, I decided to train to be a nurse, which was a mistake. One of the instructors said I probably had the smarts, but I didn’t have the physical ability, so that concluded. You get knocked around a little with TS — I am the first to admit that. But in 1985, when I was in my 40s, I got a grant to finish my college education.
Marriage and Starting a Family
Right out of high school, I started to date someone, and we eventually married in 1963. The next year, he had an accident and passed away. In February 1965, my sister took me to a dance with her, and I met a guy there, who I ended up marrying in 1966, when I was 24. We moved to a farm and lived there until the 1980s.
My second husband and I adopted a daughter, Julie, in 1970. She is a really wonderful lady. Her teenage years were a bit tough. She wasn’t really the “good Catholic girl” I thought she should be (we can joke about that now). But she’s a wonderful, gentle person. We were going to also adopt a boy, but I got pneumonia about that time, and I thought, “I just can’t keep up with this.” Also, there would be such a difference in their ages, so we never did adopt a boy.
Julie is now married and has three stepchildren, and I’m a great-grandma. When I was younger, dealing with my infertility issue was difficult. But it has turned out alright — we were very busy on the farm, while raising Julie.
My second husband and I were married for a little under 49 years. He was a good person but he had bipolar disorder, which was difficult. He died in 2014, and my parents, who had been married for 74 years, died two months later. They were in their mid-90s when they passed away, so I probably have some good genes behind me. I’m a feisty one, so I should keep going for a while longer. Again, I feel so lucky.
My Medical Challenges
I have experienced some TS- related medical issues. including horseshoe kidney (renal fusion), a lazy eye (amblyopia), and fairly significant hearing loss which has become worse in very recent years. These are associated with TS and there’s a general weakness on the right side of my body. But overall, I’m still healthy for my age — for which I feel very lucky.
My Life Now
I live in a small apartment by myself, and I don’t have too much I have to do now. A helper comes in two hours per week to assist with cooking, cleaning, etc. I adopted a cat, Bennie. He is a sweet kitty, and I really love him. Bennie was feral, and I’ve had him for several years now. I enjoy taking care of him — I am very blessed. For example, my daughter comes to take me to get my hair done tomorrow and we want to do some thrifting. I just don’t stop.
Thankful for a Long and Event Filled Life – and Advice for Younger TS Patients
I must be one of the oldest living patients with TS, maybe we need to check the Guinness Book of World Records! I have lived a long life with TS, with relatively few medical issues, and so for this I feel so very lucky. I’ve never actually met anyone else with TS, but I’ve heard of other people. They tell me there’s a little gal here in town who has it.
To the younger people with TS, I would say to never give up. You’re OK, and God loves you. Just hang in there.
Written by Robert Burleson, Edited and designed by Gerely Caba, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2026
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