I Wouldn't Change a Thing | Turner Syndrome Foundation

My Story: I Wouldn’t Change a Thing

As part of its monthly My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their parents/caregivers. This month, we present the story of Jill, a 28-year-old woman with TS. Jill discusses how she found the right resources to face the challenges posed by TS and succeed.

Please note that each individual’s journey is different. Seek advice from your own health care providers to address your particular needs.

My Journey with TS

Despite everything, I have still been able to live a happy, healthy, and independent life. 

Jill, woman with TS

My name is Jill, and I was diagnosed with mosaic TS at age 10. Some of my primary symptoms have included  short stature, low hair line, learning disabilities/focus issues, weight problems, hypothyroidism, skin issues, anxiety, and depression. Since I have mosaic TS, there are many other related conditions that I do not have. Despite everything, I have still been able to live a happy, healthy, and independent life by finding the right resources to help me face my challenges.

My Diagnosis

At about 10 years of age, my pediatrician noticed that I had not even made the curve on the height chart. Also, my parents and pediatrician both noticed that I was having learning issues in school. Tasks as simple as drawing shapes or even the most basic math problems caused me trouble. I was also always getting bad ear infections, which caused very high fevers. 

My pediatrician then decided to get me tested, and that’s how the diagnosis began. I was already about 95% done growing in height–I was 4’5″ tall–since I found out a little later in childhood. My doctors estimated that I would end up about 4’7″, even with growth hormones, but I made it to 4’10”. As a child, the only thing I noticed that made me “different” from everyone else was my height, and that I needed a lot of extra help in school. I was also getting bloodwork done often and seeing an endocrinologist. However, I was still young and didn’t think much of it. Overcoming the challenges of TS was not yet on my radar.

How TS Has Affected Me

I do know that, when the time comes, I will be a mother one way or another. Just because I cannot conceive does not mean I will never be a mom! 

Jill

Most of the challenges I have faced due to TS have hit me more as an adult than as a child, since I now understand a lot more about what is going on. The biggest impact has been how much my medical and learning issues are associated with TS. It is all starting to make sense–the anxiety, irritability, and inability to make decisions. One big impact that I have come to terms with is potentially not being able to conceive a child. I do know that, when the time comes, I will be a mother one way or another. Just because I cannot conceive does not mean I will never be a mom! 

Challenges I Have Faced

I have overcome mental health issues and physical issues, and for that, I am very proud of myself. To this day, I still struggle at times, but every accomplishment is huge to me. I wouldn’t change a thing. 

Jill

I have had many challenges, the biggest one being school. I struggled in school from a very young age due to learning disabilities and focus issues. As a child, I had many tutors, which helped a lot. We found great study techniques that worked for me, and I stuck with them. Finding the right resources that work for you is critical. Another big thing I have done is learn to love myself for who I am. I tell myself that I have overcome many obstacles and that I am stronger than I think. Learning to love and embrace my body has been crucial; I am no longer afraid to show off my curves.

I hit a very low point in life about six years ago, and my anxiety was through the roof. Additionally, I began to feel depressed. I am not one to ask for help; I like to figure things out on my own. But I decided that I needed to reach out to someone. One of the best decisions I have ever made was to begin therapy. I have overcome mental health issues and physical issues, and for that, I am very proud of myself. To this day, I still struggle at times, but every accomplishment is huge to me. I wouldn’t change a thing. 

Looking Toward the Future

In the future, I hope to expand my career in healthcare. I ended up getting my dream job at my dream hospital, and I know it will only go up from here! I would love to become more active with TSF and help spread awareness and help others going through similar things. Eventually, I want to meet someone, settle down, and have a family. I know the future is bright.

The Importance of Connection

My research about TS led me to TSF. It was inspiring to hear stories of other women who are going through similar issues. TSF’s website also provides good information about TS and how to live with it. No matter what obstacle comes your way, you will overcome it. It may be challenging, but it will make you stronger in the long run. You can do anything you set your mind to by finding the right resources to face the challenges faced by TS and succeed!

Written by Jill, a woman with TS, and edited by Susan Herman, TSF volunteer blog post editor and translator.


For more posts in the My Story series, see TSF’s blog.

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