PREVIEW

WORDS BYLINE: Andrea Caknis

She spends her days saving lives in an emergency room. But behind the scenes, Samantha Staab is fighting a secret health battle and lives in a body she cannot fully control.

The 25-year-old, from Jacksonville, in Florida, has a rare neurological condition that affects nearly every movement she makes.

Samantha lives with DYT1 dystonia, a genetic movement disorder that causes painful, involuntary muscle contractions, twisting movements and abnormal postures.

“It is almost as if your body is having a contraction 24/7,” she said. “People think because I’m constantly walking like this that I must be used to it and that there’s no pain, but that’s not true. I’m in chronic pain.”

Despite the physical toll, Samantha refuses to let the condition define her, and continues to show up for her patients in one of the most demanding roles in medicine.

“The hardest part about working as an ER nurse with dystonia is the amount of walking you have to do,” she explained.

“For me, my walking is affected the most, so simple things like walking a patient back are hard.”

Even the smallest tasks can quickly become exhausting.

“If I forget something, I have to walk back and forth again, which fatigues me even more,” she said.

“The longer I’m working, the worse my speech gets and the harder it is to enunciate words.”

Working night shifts only adds to the strain, and sleep doesn’t come easily.

“I struggle to sleep during the day, so I’m often running on just two to three hours before a shift,” she said.

“The more fatigued I get, the worse my dystonia becomes.”

The condition doesn’t stop her from doing her job, but it does make it significantly harder, both physically and emotionally.

“I’m already a very emotional person, and the ER is busy and overwhelming,” she said.

“My dystonia doesn’t necessarily get in the way, but it frustrates me. People will point and ask why I’m walking like that, and when my speech is bad, people struggle to understand me.”

Samantha was first diagnosed as a child, after the condition rapidly progressed and left her unable to walk, forcing her into a wheelchair.

DYT1 dystonia is a rare neurological disorder that can affect multiple parts of the body, including the limbs, torso and vocal cords. In Samantha’s case, it impacts her walking, posture and speech.

“It’s abnormal postures and positions,” she said.

“Sometimes my foot doesn’t go the way I want it to, or my back rotates the opposite way.”

Managing her mindset has become a crucial part of living with the condition.

“The more frustrated or upset I get, the worse it becomes,” she said. “The best thing I can do is stay positive, slow down, and not focus on what others are thinking.”

Determined to regain control of her body, Samantha underwent deep brain stimulation (DBS), a complex procedure that involves implanting electrodes into the brain to regulate abnormal signals.

Incredibly, she was awake during the operation, and found the experience fascinating.

“You get to watch them perform on your skull on a TV in front of you,” she said.

“Coming from healthcare, I was so intrigued. I asked tons of questions, I was more focused on what they were doing than the fact they were operating on my brain.”

The surgery helped her relearn how to walk, but her journey has been anything but straightforward.

In April 2025, she underwent a second procedure to improve the placement of the electrodes, fully aware it would temporarily set her back.

“Going back into a wheelchair after my second surgery was probably the most frustrating part,” she said.

For around three months, she was unable to walk again, without any certainty about when things would improve.

“There is no set date that you get out of it,” she said.

“Every day I would forget I couldn’t walk, try to stand, and fall. It was scary not knowing if I would ever get out of the wheelchair again.”

Now back on her feet, Samantha continues to undergo physical therapy and adjust her treatment, slowly rebuilding her strength.

But one of the hardest parts of living with dystonia, she says, is how others perceive her.

“A lot of times people think I’m drunk and won’t let me into places,” she said.

“People at work sometimes mistake me for a patient, or yell ‘help this girl’ thinking I’m having a stroke.”

While the comments can be hurtful, she has learned to channel those moments into raising awareness.

“People don’t understand dystonia, and they might never fully understand, but I use those moments to educate others,” she said.

Her experience has shaped not only her resilience but also her career.

“I think dystonia has made me a more understanding person and a better nurse,” she said.

“It’s made me someone who adapts and doesn’t give up.”

She also revealed that dystonia affects her family, with her older brother living with the condition as well, something that has deepened her determination to challenge misconceptions.

“It’s frustrating when people assume it affects mental ability,” she said.

“Dystonia is a neurological movement disorder, it has nothing to do with intellect.”

Samantha is also passionate about raising awareness and supporting research into the condition, something that is deeply personal to her family.

“I want people to understand that dystonia is something that researchers are actively working towards finding a cure for,” she said.

“My family founded a foundation called Tyler’s Hope for a Dystonia Cure, where all donations go towards research. The more funding there is, the more progress can be made.”

She added that she hopes more people will take the time to learn about the condition and support ongoing efforts.

Through it all, she credits her faith and support system for helping her keep going.

“On my toughest days, I turn to God,” she said.

“I’ve been blessed with an amazing support system, my family, friends and boyfriend all push me to keep going.”

Now, she is using her growing TikTok platform to raise awareness, answer questions about dystonia and support others facing similar challenges.

“I’ve had people reach out who are about to have the same surgery and ask for advice,” she said.

Looking ahead, Samantha hopes to continue working in emergency care, eventually moving into trauma, while also expanding her advocacy work through public speaking and social media.

“I want to keep raising awareness and eventually help find a cure,” she said.

Despite everything she has faced, the pain, the setbacks, and the daily challenges, she remains determined to keep moving forward.

“It’s a long road,” she said, “but I’ll come out stronger than ever.”