As part of its monthly My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their parents and caregivers. In this post, Rita, a 78-year-old woman who was diagnosed with TS at 17 years old, shares her story and how she feels so lucky, even in the face of challenges.
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.
“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
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 tiny. 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, and I always wanted to be a “big girl.”
When I was five years old, my father said he didn’t want me to go to 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.
I was diagnosed with TS when I was about 17 by a gynecologist at the university hospital. I hadn’t begun menstruating yet or had any breast development. Of course, I was always short, but I finally reached 4’11”. My parents and I were very glad to know what the problem was. I remember wearing a padded bra to look more like the other girls. I don’t know if growth hormone therapy (GHT) was in use then, but I was too old, anyway. 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 when I was, back in 1959. After all, I was born in 1942, only four years after Dr. Turner discovered the condition!
I didn’t tell anybody about my diagnosis except my parents and my immediate family. 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 the extra push. She thought that a college education might help me get a job.
Transitioning to Adult Life
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 ’80s. In 1985, when I was in my 40s, I got a Willie Nelson grant to finish my college education.
I did not really get the job I wanted after graduating from college. I’ll be the first to admit that I wasn’t the first one an employer would hire. I was interested in special education, and there were a lot of teacher colleges and teachers where I lived. I did get a job at a Catholic school for a year. And then I decided to train to be a nurse, which was kind of a mistake. One of the teachers said I probably had the smarts, but I didn’t have the physical ability, so they got me out of there. So yeah, you get bumped around a little with TS; I would be the first to admit that.
Starting a Family
My second husband and I adopted a daughter, Julie, in 1970. She is now 50. 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, like I said, she’s a wonderful, gentle person. Julie is now married and has three stepchildren. And I’m a great-grandma! It’s been quite a ride. When I was younger, dealing with the infertility issue was difficult. We we were going to 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 the kids’ ages, so we never did get a boy. But it’s alright; we were very busy on the farm, raising our daughter and getting everything done.
I do have some minor medical issues, including horseshoe kidney (renal fusion), a lazy eye (amblyopia), and fairly significant hearing loss. But overall, I’m pretty healthy, for which I feel very lucky. 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, and that’s fun. And this is really strange, but coincidences do happen: He’s a male, and I think he’s part calico, which is very rare, just like TS. He is a sweet kitty, and I really love him. Bennie was feral, and I’ve had him for about five months. I never had a son, but I did get my kitty boy.
A Long Life
My second husband and I were married for a little under 49 years. He was a good person–he really was–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.
On June 1st, I will be 79. Hopefully nothing happens between now and then–because you just never know. I must be one of the oldest living patients with TS–maybe we need to check the book of Guinness Book of World Records! I have lived a long life with TS, with relatively few medical issues, and 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 Rita, a delightful, 78-year-old woman with TS. Edited by Susan Herman, TSF volunteer blog editor.
For more information about living with TS, click here.
To read more My Story blog posts, click here.