Understanding Experiences with Turner Syndrome- Research Project | Turner Syndrome Foundation

Understanding Experiences with Turner Syndrome- Research Project

Research Opportunity

Audrey (AJ) Jones is an anthropology PhD candidate at Emory University. She has been studying Turner Syndrome and working with the Turner Syndrome Foundation (TSF) since 2016. After completing her Princeton University Bachelor’s thesis on Turner Syndrome communities, she is now exploring how ideas about gender and disability relate to the lives of patients with her latest Turner Syndrome research project on their diverse experiences with the condition. She strongly believes that creativity, activism, and education are central to research.

Why I Research Turner Syndrome

When I started researching Turner Syndrome as an undergraduate anthropology student, I thought I would simply complete the requirements for my degree and then transition to something new. After all, I had only just learned about it in a genetics lecture.

At first, I was only interested in infertility. However, I soon realized there was so much more to the actual experience of having Turner Syndrome. As a result, I became curious about how ideas of gender and disability shape perceptions of the condition.

Evolution of My Research

Then I began asking myself:

  • What made me drawn to infertility?
  • How did ideas of women and health impact assumptions I had about a condition I knew little about?
  • How were girls and women with the condition and their families impacted by these same assumptions?

Now, more than four years later, I can’t imagine stopping my Turner Syndrome research. I am motivated by the inspiring patients, families, doctors, and volunteers who have dedicated their time to one another and to research opportunities like my own. I hope to share their stories through my research. It’s impossible to not want to learn more and get involved in any way I can.

About the Research Project

This project is a culmination of many years of befriending and learning from Turner Syndrome patients of all ages. While researching, I realized that I didn’t just want to share my work with academic audiences; I also wanted to create something that would both be fun for the participants and educational for the public. Additionally, I also hope that my research helps share the stories of girls and women with Turner Syndrome to raise awareness.

I decided to include a theater performance because it is a wonderful way to bring new stories and ideas to a broad audience. Plus, it’s a fun and collaborative way to get to know your fellow performers! I am lucky enough to be funded by the National Science Foundation, which shows outside recognition of the importance of this project.

In this project, I will:

  • interview girls and women with the condition, their families, doctors, and volunteers from anywhere virtually;
  • create a play with interested girls and women from North Carolina only that explores their stories, which will be performed for an audience we select together;
  • host and attend TSF events; and
  • host and attend events for the local nonprofit Turner Syndrome of the Carolinas.

I hope this project will:

  • grow my understanding of Turner Syndrome from a social science perspective;
  • strengthen the overall understanding of Turner Syndrome from a social science perspective, which is often lacking in medical and psychological research;
  • inspire others during this pandemic; and
  • show the importance of continued Turner Syndrome research on the diverse experiences of girls and women with the condition, not just infertility.

Also, if you participate, and you are curious about any other research opportunities in the future, you can contact me and let me know. If you are interested, I can notify you about other research opportunities or new breakthroughs that I’ve found!

Interested in research breakthroughs and other opportunities to participate in research, but do not want to participate in my project specifically? You can also contact me using the information below and let me know what I can do to help!


To learn more about this and other research opportunities, reach out to AJ at:

Other Ways To Help with Turner Syndrome Research

Want to find more ways to contribute to Turner Syndrome research projects? Check out the article Turner Syndrome Research Opportunities to learn more.

Are you aware of any other Turner Syndrome research project opportunities? Please let us know by sending us an email at info@tsfusa.org.

Additionally, if you are in need of members of the Turner Syndrome community to help with your research project, you can also contact us at info@tsfusa.org for more information.

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