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TSSUS Board Member Spotlight, Introducing Jeanna Lee – TSSUS Board Chair

I am a native Floridian who was diagnosed with mosaic Turner syndrome (TS) at age 13. When I was diagnosed, due to cultural expectations, I did not tell my grandparents and uncle about my genetic condition. Because I had mosaic TS and few outward physical features common with TS, none of my friends suspected anything out of the ordinary, besides the fact that I had a lot of doctors’ appointments and that I was very short for my age. As a result, I never had the opportunity to truly discuss and consider the impact Turner syndrome had on my life. I never even mentioned Turner syndrome to anyone after my initial diagnosis.


Although diagnosed as a teenager, I did not meet anyone else with TS until my mid-20s, after I moved to Virginia. When I attended my first local TSSUS support group in Washington, D.C., I heard the words endocrinology, chromosome, and karyotype thrown about - words that are not usually in daily conversation. It was one of the rare moments where I realized I wasn’t the shortest in the room. In fact, I almost felt like a giant among most of them, although that might be a stretch.


I felt a sense of community that I have not felt since leaving Florida. With that realization, I decided to finally embrace that Turner syndrome was a part of me. I am not just my TS, but I learned to accept that it is a part of me and that it does have an impact on my life. I became involved with the local TSSUS support group, helping with the Facebook group, organizing social events for our members, and connecting with mothers with newly diagnosed babies with TS.


The local group leader then mentioned I should apply to be on the Board of Directors for TSSUS and believed I would bring a novel perspective and fresh energy to the board. I considered it for more than  two months before throwing my hat into the ring. I decided to apply to better serve and represent the members of my local support group. I wanted to be their voice and make changes based on what they needed. But once I was accepted, my mission and purpose expanded beyond just my local support group.


At my first TSSUS conference, I talked to dozens of our members and got to know them personally. I listened to their stories while empathizing with some of their challenges. Again, that sense of camaraderie grew. Since joining the TSSUS Board of Directors, not only am I able to see the direct impact TSSUS has on our members’ lives, I feel like I am in a position to better serve all people with Turner syndrome. It is my vision to be a resource for those with Turner syndrome, to increase visibility of this condition, and to promote diversity, acceptance, and inclusion for all.


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