‘My legs turn to jelly’: Inside the invisible disease with no cure and no charity

Kylie’s legs turn to jelly every time she stands up.

For about 100 Australians that’s what they’re fighting against every single day — a rare, progressive, neurological disorder that makes standing up impossible. There’s no cure and as they’ve found, no charity or organisation to turn to for help.

“Like my head wasn’t communicating to my feet ... I could feel it but no one else could see it,” Kylie Humphreys told A Current Affair.

Humphreys, 44, suffers from orthostatic tremor, also known as OT, a condition that takes away sufferers’ ability to stand on their own two feet for long periods, experiencing violent tremors in their legs.

“Like being on a wobble board.”

When Humphreys stands still she feels like she’s about to come crashing down and is often desperately searching for something to lean or sit down on.

“It’s invisible, we look normal but we certainly don’t feel normal. If I can’t find a seat that’s when panic will really set in,” Humphreys said.

Associate Professor Dr Andrew Evans from the Royal Melbourne Hospital diagnoses OT with a stethoscope.

“We put the stethoscope on the thighs when the person’s standing and you can hear that classic almost like helicopter tremor in the thighs,” Evans said.

“It’s the same frequency as the tremor that you get or a weightlifter gets when they lift an incredibly heavy barbell above their head and you can see them sort of wobbling like they’re going to fall.”

Humphreys, who is still in the early stages of the disorder, walked 14 kilometres to help raise awareness after she discovered no organisation existed to raise money for the condition.

“I feel like there are organisations, charities, fundraisers, there’s everything for every possible condition, so it blew my mind that there was nothing for us,” she said.

“I wanted to do something and I just said like what can I do… I want to be able to try and raise money for research, but there was no place to send the money to, so I just thought well I’ll just walk for awareness.”

Since her diagnosis four years ago, Humphreys has found solace in the saddle.

“Once I’m sitting on the horse, there’s no tremors, it’s just like sitting down in a chair, like it’s just an instant calmness ... the prepping of the horse is really hard now, but once I’m on the horse, I feel normal again.”

Humphreys hopes her efforts to raise awareness will help all sufferers.  

“I just want to make a difference. I just want to get the word out there, I just want some research to be done.”

Watch the full story in the video player above.