Patient Stories

Gaining Valuable Perspective Through an Unexpected Diagnosis of Guillain- Barré Syndrome

Jan. 18, 2024

In 2021, Grace was your typical college freshman at the University of Cincinnati (UC), spending time with friends and pursuing an education major.

“I loved it there. My mom, grandpa, and both my siblings went there. We’re a huge UC family”, said Grace.

The Onset of a Rare Disease

But in February 2022, her life took a scary and unexpected turn when a mononucleosis (mono) diagnosis rapidly escalated.

“I had issues with my liver. I was jaundice and I just kept getting sicker. And then I started having really bad back pain and just wasn't feeling right. For two to three weeks, I wasn’t getting any better,” remembers Grace, reflecting on the early symptoms of what would be diagnosed as a rare disease.

Misdiagnosis and the Search for Answers

She visited her pediatrician every couple of days, knowing something was wrong. She continued to be advised to just watch her symptoms. Dealing with intense pain, Grace ultimately ended up in a local emergency room. Once again the providers advised her to watch and wait, attributing her symptoms to the mono. Grace’s situation rapidly deteriorated further, and within a couple of weeks, she woke up one morning with the right side of her face paralyzed, accompanied by tingling and numbness in her toes and fingers.

Alarmed, her mother, Jenny, took her back to the local emergency room, where she was diagnosed with Bell's Palsy, a complication of mono. With no improvement and escalating symptoms, including facial paralysis, blurred vision, and impaired mobility, Jenny knew it was time for another opinion, and waiting and watching was no longer an option. Jenny is an inpatient nurse navigator at the UC Gardner Neuroscience Institute and knew this was where she would turn to for answers.

Guillain-Barré Syndrome: Diagnosis and Beginning of Recovery

Grace was quickly seen by Stacie Demel, DO, Ph.D., a physician-researcher specializing in neurological disorders in the Department of Neurology and Rehabilitation Medicine. Within minutes, Dr. Demel knew Grace was dealing with Guillain-Barré syndrome (GBS), a rare neurological disorder.

Dr. Demel recalls, “Grace’s symptoms including rapidly progressive weakness, that often includes facial weakness, in conjunction with back pain, and loss of deep tendon reflexes on neurological examination were all signs and symptoms consistent with GBS. Because additional testing, monitoring, and immediate treatment were imperative, we arranged for Grace to be directly admitted to the hospital.”

Despite initial misdiagnoses by outside providers and treatment delays, a pivotal moment occurred when Grace was finally admitted to the intensive care unit (ICU) at UC Medical Center to begin her recovery. Under the care of the UC Health team, Grace received the appropriate treatment, including intravenous immunoglobulin (IVIG), to address the GBS. After 8 days in the ICU, Grace was able to continue her recovery journey at the UC Health Daniel Drake Center where she gradually regained functionality through extensive physical and occupational therapy.

The Road to Rehabilitation

During her five-month outpatient rehabilitation, a key part of her recovery, she worked on rebuilding her strength, moving from a wheelchair to walking independently to using an elliptical. Through occupational therapy, she learned to type again and addressed her facial paralysis with the help of Colton Sayers, OTD, OTR/L, CNS, a UC Gardner Neuroscience Institute occupational therapist.

“I still had facial paralysis. That was the last thing for me to get back. I had a facial droop for a very long time on my right side and Colton was able to get that to progress quicker. He showed me stretching techniques on how to start waking up those muscles again and exercises I could do. I'm very thankful for him,” said Grace.

A New Perspective: From Patient to Nurse

Grace has made remarkable progress, demonstrating the effectiveness of physical therapy and rehabilitation in her recovery journey. Throughout this period, she experienced unwavering support from her nurses, whom she credits for inspiring her to pursue a career in nursing. The decision was fueled by a desire to provide the same level of compassionate care she received from her nurses during her hospitalization. Now enrolled at Christ College of Nursing, she is on track to complete her program in the summer of 2025, motivated by her own experience as a patient.

“My nurses were so amazing. I really connected with them. They just provided so much support and treated me like a person and not just a patient - that's what made me want to go into nursing. They became like a little family, and I just love them so much. I want to be there for other patients as my nurses were there for me. I feel like since I've been in those shoes before, I can give better care. I feel like it's just going to make me a better nurse and caretaker.”

Guillain-Barré Syndrome: Advocating for Proper Care

Reflecting on her journey as a Guillain-Barré patient, Grace emphasizes the importance of trusting your instincts and advocating for proper medical attention. She acknowledges the rarity of her condition, Guillain-Barré syndrome, especially in someone her age, and highlights the significance of being connected to the right healthcare professionals.

“You know your body best and you should trust yourself. What you're feeling is valid and connecting to people that understand that and see and hear you and hear your concerns is so important…I am completely back to normal. It’s like a little blip in my life that I feel like didn't even happen.”

Jenny is especially grateful for the expertise and care her daughter received at UC Health and encourages others to recognize the resources available within their community.

“I think people don't understand how good we are here.”

Grace adds, “I couldn't make it through this without being here, so I think it's just important for people to know the community resource we have here and how bad it would have been if I didn't get connected when I did.”

As she moves forward in her nursing career, supported by her family and the UC Health experts who played a crucial role in her recovery, she is eager to contribute to patient care with a unique perspective shaped by her own journey.