Turner Syndrome Foundation
The Turner Syndrome Foundation’s (TSF) My Story blog series highlights the experiences of individuals, families, and caregivers impacted by Turner Syndrome (TS). Their stories have an incredible ability to inspire others and make a positive impact on the TS community. This month, we share JoLynn’s story. She is a mother, writer, victim advocate, and wonderful human being. JoLynn loves to write, particularly poetry, and has an undergraduate degree in fiction writing. She enjoys helping people find the strength within them.
Diagnosis
I dropped off the growth chart around age five, and after having my fourth ear infection in a year, my pediatrician tested me for and diagnosed me with TS at the age of six. The diagnosis really hasn’t affected my family, other than my needing to have multiple medical check-ups.
Life with TS
The biggest challenge for me was learning I would not be able to get pregnant naturally. I needed to go through IVF, with my sister as the egg donor. Overall, the IVF process was fairly easy. Since we had a known/related egg donor, 23 eggs were fertilized. It worked on the first try! My pregnancy was free of complications, except for a gestational diabetes diagnosis. I ended up having a C-section after 13 hours of labor. It is almost 10 years later, and we are both healthy.
The only real challenge, besides having to go through IVF to get pregnant, is managing all the doctors and specialists. In addition to my primary care provider, I see an endocrinologist, gastroenterologist, cardiologist, and ENT. I created a spreadsheet to keep my medical information and appointments organized.
IVF & Pregnancy with Donor Eggs
- Only two to five percent of women with TS are able to conceive spontaneously.
- Pregnancies are more likely to occur in women with mosaic karyotypes, rather than classic TS (monosomy X).
- IVF is an option for childbearing for some patients with TS.
- IVF with donor eggs offers the highest likelihood of success.
For more information about reproductive health, click here.
I have learned that there is so much strength within people, even if they don't see it themselves.
Finding Support
I am grateful for the community of women with TS around the world I have connected with. When I moved to New York, I searched for support groups in the area and found TSF. I love meeting new people in the area and enjoy attending TSF workshops.
These are some of the many programsTSF offers to support the TS community:
- Star Sisters – a private, online group for those affected by TS to share stories, learn, and build community
- 24/7 Caregivers Group – a support group for caregivers of individuals with complex cases of TS who require long-term, 24/7 care
- WE Learn webinars – monthly webinars to further access to information for TS patients and caregivers. We invite professionals and experts to speak on a number of topics that are important to those affected by TS.
- Guidelines & Resources for patients, caregivers, and medical professionals
What I’m Most Proud of
I have dedicated my life to assisting survivors of sexual assault as a victim advocate. As a survivor myself, I wanted to help others. I have learned that there is so much strength within people, even if they don’t see it themselves. My plans are to continue my work with survivors. I am also writing a book.
Share Your Story!
TSF encourages you to share your personal story, whether you are a patient, parent, caregiver, teacher, or medical professional. Simply submit your information on our website, and we’ll contact you and take care of the rest! You can choose to use your first name and include photos or remain anonymous.
We all have a story to tell. Sharing our journeys is not only helpful to others; it can also be cathartic for us.
Written by JoLynn, a woman with TS, and Valeriia, TSF volunteer blog writer. Edited by Susan Herman, TSF Blog Coordinator. Designed by Jasmine, TSF volunteer blog designer.
© Turner Syndrome Foundation, 2022
I know ther is so much more to JoLynn’s story and I still think it is courageous to share this part of it. I am so proud of her, her life, her actions, her writing, her husband and son! I am her Mother-InLaw and I believe in JoLynn!!1