BOISE, Idaho — The Idaho Turner Syndrome Foundation will host a free, public event celebrating its members and the state's proclamation that February is Turner Syndrome Awareness Month.
The event is Saturday, Feb 10th, 11 a.m.- 2 p.m. at the Idaho State Museum.
(Below is the transcript from the broadcast story)
Idaho has once again declared February as “Turner Syndrome Awareness Month”.
I’m your neighborhood reporter Allie Triepke here outside the Idaho State Museum where those affected by the rare genetic condition —and those looking to learn more— will gather on Saturday to celebrate and support each other.
“How’s my daughter going to turn out? Is she going to be okay? Will she have a good quality of life? And we’re here to say ‘Yes’.” says Jacquelyn Wooldridge, VP of Communications for the Idaho Turner Syndrome Foundation.
Turner Syndrome is a rare genetic condition that affects 1 in every 2000 women born in the US.
“I think the main thing I would want people to know is you can have a full life,” says Mandy Thueson, the support group president.
The women tell me the physical effects vary for every woman diagnosed. Many are faced with reproductive and development issues, and having the shared unique experience brings them together.
“That means so much to me, that I have friends that are going through the same thing that I have. That they know about it and that is huge to me,” says Thueson.
The condition also puts them at risk for heart, kidney, or immune system issues, and their support group offers friendship and more.
“Just to feel like I am not the only one, or alone, who is dealing with heart issues or hearing loss,” says member Tereza Hopewell.
PREVIOUS COVERAGE | Turner Syndrome Awareness
Members of the group continue to push for awareness because they feel healthcare providers still lack knowledge and resources for Turner Syndrome.
“Their providers don’t know a lot about it so they have a lot of questions,” says Wooldridge.
In awareness and education efforts, the foundation is hosting a public event this Saturday in Boise. Those in attendance will learn more about TS and can find support with women affected by TS.
“Because a lot of women who have never met other women and girls with Turner Syndrome don’t have that social support,” says Wooldridge.
Butterflies are an important symbol to the foundation because they represent change and growth that is beautiful.
“No matter who you are, or what circumstances you were born into, you can find change and beauty,” says member Charlene Curtis.
Again the event is on Saturday, starting at 11 a.m., in the Idaho State Museum. Everyone looking to show support or learn more about the local foundation is invited. I’m your neighborhood reporter Allie Triepke, for Idaho News 6.
