Rare Disease Day 2024 – Lori’s Story 

News and Blog Rare Disease Day 2024 – Lori’s Story  Featured Image

More than 300 million people globally live with a rare disease, and just 100,000 live with Guillain–Barré Syndrome (GBS). Rare Disease Day is observed annually on the last day of February to increase awareness of 6000+ rare diseases like GBS and advocate for equitable access to diagnosis, treatment, care, and social opportunities. 

In honor of Rare Disease Day, we spoke to Lori Haller, a longtime neighbor and lifelong friend of AxoSim scientist Tyler Rodriguez, PhD, about her experience with GBS. Lori’s story has become an inspiration to the AxoSim team, making research for neurological conditions even more meaningful. Read Lori’s story below. 

Lori’s Story

Three years ago, Lori Haller noticed a shift in her balance and changes to her gait. Her symptoms progressed, and so did her ability to serve her senior patients as an occupational therapist. One day, she said, “That’s enough,” and embarked on a long journey for answers with her husband, Jack, by her side.   

After what seemed to be an endless cycle of medical tests and different doctors, a visit with internal medicine physician Brandon Fontenot resulted in a diagnosis of Guillain–Barré Syndrome (GBS). Fearful of the future, she at least finally knew what caused the pain she described as “nerve endings on fire.”  

“I thought, ‘Thank God there’s a name for it’,” she said.   

GBS is a rare disease that causes an individual’s immune system to attack the body’s peripheral nerves. Lori also received a diagnosis of a variant of GBS called Acute Motor Sensory Axonal Neuropathy (AMSAN) that attacks both the myelin sheath and the axons of sensory neurons and motor neurons. 

 “There’s no prognosis known,” Lori said. “A lot of people come back from it. A few people don’t. There are no two cases alike, and there’s no way to know what’s going to happen.” 

Living With GBS

After finding a name for her condition, Lori began rehabilitation at TIRR Memorial Hermann in Houston in hopes of gaining back some of her independence. 

“I was anxious to get to TIRR because I was anxious to start walking again,” she said. “Cognitively, I wasn’t aware enough to understand that there is a very high probability that I may never walk again.” 

Lori now does her physical therapy and occupational therapy at home. Her husband, Jack, has also been instrumental in helping Lori regain sensorimotor function day-to-day.  

AxoSim scientist and Lori’s neighbor, Tyler Rodriguez, said, “They play games to test her sensation in her hands (Jack hides objects in a bowl of rice for her to find) and come up with clever ways for her to perform daily tasks on her own (such as drinking from a cup she can actually grab herself).”   

Though Lori was diagnosed with GBS nearly a year ago, she is only now fully understanding and accepting what her future may look like. 

We don’t wanna face reality a lot of times, especially when we have diseases like this,” Lori said. “I will never be the same person again, but I’m hoping if I can keep my spirits high, then I can hopefully become part of the person [I was], but better yet, a better person [than I was].” 

Seeing Lori’s experience firsthand, and especially her positive outlook, has made a major impact on Tyler, not only as a scientist but as an able-bodied person.  

The fact that she lost the ability to do these daily things that are easily taken for granted helps me to appreciate the abilities I have and has strengthened my desire to use these gifts to help people with similar debilitating conditions,” he said. 

Hope for the Future

Lori knows that significant medical advancements may not arrive in time to help her. However, she is encouraged by the progress she has seen since her diagnosis, especially with awareness. 

“Half of the people I tell have never heard of [GBS], even in the medical profession,” she said. Initiatives like Rare Disease Day are instrumental in informing more people about GBS. Lori hopes that it won’t take as long to diagnose these conditions in the future. 

Lori beamed with pride when talking about Tyler, sharing stories from his childhood and his career accomplishments as a scientist. Knowing that people like Tyler are thinking of ways to help people with GBS provides encouragement and hope. 

Tyler said, “I have been putting together ideas for creating a model to test novel treatments for which she has been the sole motivation.” 

Lori is an inspiration to not only Tyler, but the entire AxoSim staff. Our team will continue to cheer for Lori as she reaches new milestones, including her next goal for this summer. 

My niece, who I love dearly, is getting married in June, and I would like to walk into the wedding, she said. “It could be using a cane or a walker. But my goal is to walk.” 

Jack and Lori Haller with gifts from the AxoSim team

To learn more about Rare Disease Day, visit https://rarediseases.org/rare-disease-day/. For more information about Guillain–Barré, visit https://www.cdc.gov/campylobacter/guillain-barre.html