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We Helped Her Understand She Was Not Alone

My name is Jacquelyn. I am 35 years old and work as an administrative assistant. This is my story.

I have known that I have Turner syndrome since I was diagnosed at the age of 5 back in 1987. My parents fought with my pediatrician to get me diagnosed because they kept saying I was just a late bloomer and they shouldn’t worry; especially since my aunts and grandmothers were on the short side.

My mom took me to a well child check and brought my younger sister into the office with me. When my doctor saw we were the same height; that changed his/her tune. I was referred to Lucille Packard Children’s Hospital at Stanford University for a karyotype. A few weeks later, we had our answer. I was diagnosed with mosaic Turner syndrome.

When I was in first grade, I was teased by some boys in a grade above me. After a month of coming home crying from school, I went to my teacher and told her what was going on. Needless to say, that experience started me on my desire to spread the word about Turner syndrome.

From then on, I spoke to my class at the beginning of the school year to prevent teasing. In fifth grade, I did a “Discovery Fair” project on TS and won 1st Place (after my teacher confirmed that I worked on the project without the help of my parents). At age thirteen, I was lucky enough to be selected to attend the Turner Syndrome Camp hosted by Children’s Hospital of Los Angeles. I spent a week in the foothills of Colorado with other girls my age who were experiencing the same issues I was. Our shared experiences included taking growth hormone, frequent visits to doctors, and getting looked over by those who were unfamiliar with Turner syndrome.

As I grew older and became more involved in school activities, playing sports, and more, I allowed my TSSUS membership lapse. I hadn’t really kept up with the Society until October 2015, when I started a new job in Sacramento, California. While I was there, I met a woman with TS who had never met someone else with Turner syndrome in her life.

I had kept in touch with the local TSSUS Northern California Resource Group, so I pretty much talked her into joining me at the next information day / meeting. To this day, I believe I was meant to get that job so I could help my friend meet other people who have TS, and were experiencing the same things she was.

We helped her understand that she was NOT alone.

Jacqueline is a key volunteer with the TSSUS Northern California Resource Group and is instrumental is on the team that organizes and hosts the Chasing Butterflies Walk in Sacramento, California each Year.


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