BATON ROUGE — Imagine losing the ability to walk overnight. For Jessica Schexnayder, a Denham Springs resident living with CIDP, this became a reality. As Rare Disease Day approaches on Feb. 28, she’s sharing her story to raise awareness about this little-known condition affecting just 0.6 in 100,000 people.
Rare Disease Day started in 2008 to help raise awareness and work toward equity in health care, access to diagnosis and therapies, and more for people living with a rare disease. Baton Rouge will hold its own Rare Disease Day 2025 event on Friday at the State Capitol’s formal gardens starting at 3 p.m.
The event is hosted by the Louisiana Rare Disease Advisory Council and is welcome to not only those with rare diseases, but families and friends, caretakers, medical providers, policy makers and more.
Schexnayder is advocating for others with rare diseases. She was diagnosed with chronic inflammatory demyelinating polyneuropathy variant, multifocal motor neuropathy (CIDP variant MMN) in 2012. Her nerves have experienced damage and they can’t get the signals to her muscles correctly, she said, which means she deals with weakness in her hands and feet regularly.
Getting diagnosed with a rare disease
She said that she experienced symptoms for about a year before she was diagnosed. She was working full time, raising a family and attending school part-time when she began experiencing things like numbness and tingling in her arms and legs.
“While taking classes at LSU, I realized in those hour and a half lecture classes, I couldn’t actually write for an hour and a half,” Schexnayder said.
She initially went to a neurologist, who ran blood tests and checked her reflexes, but he said she was probably just doing too much.
“I’ve found throughout listening to other patients with their stories that this happens frequently,” she explained.
Based on her doctor’s advice, Schexnayder began scaling back what she did; however, this didn’t help for long.
“As time went on, I was getting worse and having falls. And I didn’t know, like, why am I falling?”
She went to another doctor who thought she may have MS and referred her to a different neurologist, but it took three months to get an appointment. When she got to the new neurologist, he felt like she had CIDP, but they needed to schedule a spinal tap to confirm.
However, by the time she was able to get the spinal tap and begin the process to get the infusion medication, Schexnayder had a worse attack of symptoms that paralyzed her.
“I had to be put in the ICU,” she said.
This happened in September 2012.
The importance of plasma for CIDP patients
Until recently, there was only one treatment option available, which is through using plasma antibodies from donors. While in the ICU, Schexnayder was given five doses of the IVIG medication, and within four days, the paralysis was reversed.
“I’m a big advocate for people donating plasma, because that’s how my medication comes to me,” she said. “Without human donors, I wouldn’t be able to walk.”
Each dose of the IVIG can contain antibodies from 1,200-1,500 people, she said.
Since 2012, she has gone through IVIG infusions at home every other week. The infusions last over five hours each. If she misses an infusion, she begins to experience symptoms like the inability to walk in just days.
Plasma is the part of someone’s blood that has proteins, antibodies and clotting factors all beneficial to the body.
Several years ago, Schexnayder was able to visit Grifols, which is one of the largest plasma producers in the U.S. as part of her work with the GBS/CIDP Foundation. She visited the Los Angeles plant and was able to see the entire process of how her medicine is made.
She and the other visitors were even able to speak with donors and thank them for what they were choosing to do.
“It was a really powerful moment.”
Continuing her path forward
What Schexnayder has is considered an autoimmune condition; in other words, her immune system is attacking her nervous system. Her doctors do not know why the condition started.
Guillain-Barré syndrome (GBS) is generally considered a short-term (acute) disease, according to Johns Hopkins. It is considered to be a possible relation with CIDP, but CIDP is a much rarer disease.
However, Schexnayder’s condition is chronic and she will have it for the rest of her life.
She has met others in Louisiana with CIDP, but at this point, she hasn’t met another patient with the MMN variant. According to the GBS/CIDP Foundation, there are 28 registered people in the state with that specific version.
In 2014, Schexnayder joined the GBS/CIDP Foundation as a liaison to help others with the illness. She felt this was the right path for her to take, because she knew first-hand what it was like to go through the experience of having symptoms and awaiting a diagnosis.
“When I was diagnosed, no one really knew what was wrong with me in the hospital except my neurologist. No one had ever heard of CIDP, even the occupational therapy and physical therapy staff had never heard of it,” she said.
While she doesn’t like to use the word “journey” to describe her experiences with CIDP, Schexnayder said having this rare disease has helped her learn more about herself and what she’s capable of.
“I’ve learned a lot about myself and how strong I am and the ability, really, to overcome obstacles,” she said.
Her walking is unsteady and she is unable to climb stairs, now.
Schexnayder medically retired from her position at LSU in 2015, but has since released one book and is working on the manuscript for her second. She also writes for genealogy and history journals.
“I was only 40 years old when I had to medically retire. So in the last decade, I’ve just sort of taken myself and gone in a different direction,” Schexnayder said.
For more information about Rare Disease Day and how you can be involved, visit rarediseaseday.org.
To learn more about CIDP and GBS, visit gbs-cidp.org.
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