The theme of the 2019 TSSUS National Turner Syndrome Conference is Find Your Voice. The theme was inspired by the voices of the TS community we hear via social media and calls to the National Office. Many feel alone, disregarded, frustrated with their health conditions, bullied, uneducated about Turner syndrome, or frustrated that their doctors don’t know enough about TS. Many women and teens battle depression and anxiety as well. Here are some comments that have been shared with us over the phone and on social media from the TS community:
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People make me feel like I can’t do anything.
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I’m fearful every day of messing up.
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I feel like people don’t take me seriously.
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I feel like people still see me as a child even though I am an adult.
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I have to explain TS to my doctors.
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Our insurance denied growth hormone for my daughter.
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People treat me as if I am not there. Sometimes I feel invisible.
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How can I improve my self-confidence?
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My doctor won’t order an MRI ... what can I do?
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No one seems to know about Turner syndrome.
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My daughter has a difficult time making and keeping friends.
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My sister just had another baby. I want to be happy for her, but it is so hard.
The 2019 TSSUS National TS Conference general and breakout sessions will address these concerns, and empower girls, women, and family members to speak up for themselves, feel confident, and advocate for the best health care possible. Our exhibitors will provide insights
and tools to help attendees along their TS journey. Some of our speakers will even be on hand to offer one-one-one consultations with attendees.
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The Conference Welcome session for all attendees begins at 10:00 am on Friday, June 28. Join us as we kick off the weekend with LIVE music and important information about the weekend.
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At 1:00 pm, join a panel of TS experts in the main ballroom as they present a special discussion on Turner Syndrome Research Updates.
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Friday breakout sessions will begin at 2:30 pm, and we will offer 4-6 concurrent sessions on various topics.