My Story: I Feel So Lucky

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.”


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.

My Diagnosis

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.

Rita’s high school graduation photo, 1961

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.

Medical Challenges

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.

9 Comments on “My Story: I Feel So Lucky

  1. Hi, My name is Helen and I have TS, I am 51 years old now and was diagnosed like you at 17. I would love to correspond with you as I think you are amazing and have a wonderful outlook on life. I often find life a struggle by being so short ( I only reached 4′ 6″ ) and people not understanding that things are just a little more difficult for me than most people and it would be lovely to talk to someone like you. I am married and have a wonderful husband and a stepdaughter, also a little 3 1/2 yr old little grandaughter.
    I have been mainly healthy through life too and have the same horseshoe kidney as you, when I read your story so many things are similar to myself, it would be lovely to correspond with you if its possible.
    Many thanks and I wish you all the health and happiness you deserve, you are a remarkable lady
    Thank you, Helen

  2. I was also diagnosed at 17. I was born in 1952 and I am currently 69 years old. I am Turner Mosaic. I was never able to get growth hormone because I was diagnosed so late. I have already lost a good two inches in height in the past 10 years. I think my height at my tallest was probably 4 ft 7. I feel blessed to have had a great life.

    • I am Laquida I am a person with TS too I was diagnosed at birth in 1995
      I am now 27 still living with TS it is very difficult for me but I am still pushing far word.

    • am also Sheri ..diagnosed at 15….love to compare notes.
      God bless!

  3. I was also born with turners syndrome I am 61 have very few medical issues which is truly a miracle

  4. Our 6 yr old granddaughter was just diagnosed with TS. She is extremely bright, has a phenomenal memory, and has some issues socially (mostly she’s bossy, but she’s learning to get around that 🙂 . She has always had extra energy movements, like bouncing her legs – but that is even getting better. We have always known she is a gift from God and He has a special plan for her life. We continually pray for His wisdom to understand His plan and to be her encouragers. I, too, am encouraged by Rita’s story and would welcome any communication or advice on this new to us diagnosis.

    God bless you.

  5. Hi there!
    I am Sheri..I am 53 next week.
    I was diagnosed with ts when I was 15.
    Lots to tell..also blessed with good health..for the most part..I do have afib but that is being controlled by meds…most importantly I have God and He is sooo gracious! There is a hidden blessing with turners is very helpfull I feel.
    I would so welcome to hear from any of you ladies!!
    would love to exchange knowledge, make some friends and maybe we could even do a conference call together…
    Thank you and God bless!

  6. Love this story! Very inspirational. I’m 44 and was diagnosed at 2. I also have the same ailments with the horseshoe kidney, hearing loss, and lazy eye. Thank you for sharing your story


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