BOISE, Idaho — To support and empower Idahoans affected by Turner Syndrome. That’s the goal of the Idaho Turner Syndrome Foundation.
“We are looking to bring more awareness, for the women and girls in Idaho,” said Jacquelyn Wooldridge the VP of Communications for the Idaho Turner Syndrome Foundation and a woman diagnosed with the condition herself.
What is Turner Syndrome?
Turner Syndrome is a non-inherited genetic disorder that affects one out of every 2,000 female births. The primary medical issues that consistently affect all women and girls with Turner Syndrome are short stature and issues with fertility, but they also have a higher prevalence of heart, kidney, thyroid, and autoimmune issues.
The disorder is fairly common, but foundation leaders believe there is still a lot of work to be done in terms of education and medical treatment.
Elizabeth Bandow was diagnosed with Turner Syndrome at birth, but it wasn’t until she was a senior in high school that she met another woman like her.
“I felt very, very, very alone. So that instant bond that happens when you meet somebody else [like you],” said Bandow.
Women who also shared their stories agree that finding each other has better allowed them to navigate the challenges they face.
“I was diagnosed when I was 12, and I grew up here in Boise and didn’t meet anyone in person until I was 35. I remember when I saw [someone] who said 'I’m from Idaho' and I was like ‘I’m in Idaho too!’” says Joy Babcock.
The foundation works to educate the public about what it’s like to live with Turner’s Syndrome because many members faced bullying in school as kids due to their condition.
“I got sick and tired of it. So I told the vice principal at my school and she ended up bringing them down, making [the bullies] apologize to me in front of my class and then had me come out and explain what Turner Syndrome is,“ says Wooldridge, telling Idaho News 6 her story.
They say if more people understood what Turner Syndrome is, then positive interactions could take place. Now as adults, Wooldridge says they often have to advocate and educate healthcare providers on their experiences to get better treatment.
“You’re not wrong about wanting to get treated. You’re not wrong about wanting to get these tests done. Because in most cases, we know more about what’s going on, and what could possibly happen,” says Wooldridge.
With the closest Turner Syndrome treatment centers being in Seattle and Las Vegas, the foundation wants to raise funds to support their members through financial burdens.
“Not just the treatment costs, but also the travel costs,” Wooldridge said.
Through all of the unknown with Turner Syndrome, those living with it believe in a bright future for their group.
“You can live a life, and a good life,” said Babcock.
Members of the Idaho Turner Syndrome Foundation want to support other Idahoans who have been diagnosed or who have a loved one living with Turners.
Connect with the foundation on Facebook and online.
