One week before her first track meet with the Fort Hays State University Tigers, Tiesha Scipio noticed a weird tingling in her feet.
“It felt like pins and needles, like when your foot falls asleep,” she recalled.
Her coach suggested her shoes might be too tight.
Three days later, a Sunday, she was working at Arby’s when she noticed she had trouble lifting her left arm -- but not her right.
Tuesday she saw the university trainer. He addressed the usual suspects: a pinched nerve, a slipped disc, possible head trauma.
“Then the head trainer came out of his office,” Scipio recalled. “He said, 'What’s that French word we just heard about?'”
That word was actually three: Guillain-Barre Syndrome. Hard to pronounce and mostly unheard of.
The trainer sent Scipio to the hospital emergency room with a note recommending she be tested immediately.
“I drove myself,” Scipio recalled. “I guess I walked like I had a limp. But nothing hurt.”
She was admitted within minutes and stayed overnight.
The following day she couldn’t walk without holding onto something.
By Thursday her father had to carry her up steps and over curbs.
On Friday -- seven days after first noticing the tingling -- Scipio was completely paralyzed, and unable to swallow water without choking.
Three-and-a-half months later, the 22-year-old athlete from Manhattan, Kan., is learning to walk again with the assistance of leg braces and a cane.
Guillain-Barre Syndrome occurs when the body’s immune system attacks the peripheral nervous system -- literally shorting out the nerves that signal our legs to move, our eyes to close and our lungs to breathe.
“It’s supposed to be a rare disorder,” said Dr. Ana Delgado. But given the number of cases the neurologist has seen since joining Madonna Rehabilitation Hospital in August, she is convinced something is triggering an increase in the number of cases and the severity of this devastating and sometimes fatal syndrome.
If you’ve never heard of Guillain-Barre (pronounced ghee-YAN bah-RAY), GBS for short, you are not alone.
It is so rare and its initial symptoms so innocuous that many physicians and emergency room doctors dismiss it and send the patients home.
The National Institutes of Health estimates one of every 100,000 people will contract GBS. But Scott Culbine, who is still recovering from his attack this past August, says there is talk of revising that number to one in every 50,000 people -- a statistic far more in line with GBS patient numbers at Madonna.
Currently there are five GBS in-patients at Madonna, including Scipio, and one outpatient. Once upon a time, it was rare for Madonna to have even one GBS patient; nowadays it is rare not to have one or more, said Dan Kasparek, speech/language pathologist and Neurological Conditions Program leader.
* * *
Ben Yelkin, who nearly died from GBS last winter, has started Running Down GBS, a fundraising 5K run/walk dedicated to raising awareness and funds for families struggling with mounting medical bills and costs as they wade through the lengthy and frustratingly slow recovery process.
Yelkin went to his doctor and the emergency room twice before he was admitted to the hospital. A neurologist diagnosed GBS within five minutes of testing his spinal fluid.
By then, Yelkin was paralyzed from the waist down. Two weeks later his lungs shut down. He was put on a ventilator and placed in a coma.
“They didn’t know if I would make it or not,” said the 36-year-old father of a toddler.
His friends hosted the first Running Down GBS event in 2013 -- raising money to help his family. The response was tremendous, Yelkin said. The Running Down GBS Facebook page received over 800 likes; 270 people ran in the 5K, another 120 played in a GBS golf tournament. Together they raised over $35,000 for Yelkin’s family.
Touched by the response and inspired by fellow GBS patients at Madonna, Yelkin’s organization has partnered with the Madonna Foundation to put the spotlight on GBS and provide financial assistance to families combating the syndrome.
This year’s event recognizes Scott Clubine of Bentonville, Ark., who came to Madonna last fall following his August GBS diagnosis. Clubine’s sister, a former Madonna speech therapist, insisted the rehabilitation hospital was the best place for him to recover. When the 35-year-old father of two preschoolers arrived, he was on a ventilator and he couldn’t move from the neck down. Unable to close his eyelids, he communicated by slight shakes of the head, spelling words as family members pointed to letters on an alphabet board.
Both Yelkin and Clubine will run in the April 5 event at Holmes Lake Park.
* * *
Guillain-Barre is named for the French physicians Georges Guillain and Jean Alexandre Barré, who first described it in 1916.
Nearly 100 years later, the cause of this autoimmune disorder is unclear. There is no cure -- only recovery.
It affects young and old, men and women alike. Most GBS cases occur following a mild infection, such as a cold, stomach flu or urinary tract infection; other times, it can follow a vaccination, Delgado said.
To understand GBS, think of the body’s nervous system as a series of electrical cables, Delgado said. Just as wires are protected by an insulated covering, nerves are protected by myelin, a fatty insulation protecting the conducting portion of the nerve (called the axon).
GBS causes the body’s antibodies to overreact -- treating nerves as an infection or virus that needs to be eradicated. GBS eats away at the myelin sheath and, unless stopped, eventually damages the axon, preventing nerve signals from being transmitted.
Initial symptoms begin in the extremities -- tingling fingers and toes, cold feet and hands and “rubbery” arms and legs.
The disorder can progress rapidly, in a matter of hours or days, or more slowly, over weeks and months -- and become life-threatening as it moves inward, attacking the nerves that control the diaphragm for breathing and the throat for swallowing. At this point, patients must be placed on ventilators and feeding tubes, Delgado said.
Unlike other autoimmune disorders, such as multiple sclerosis and ALS (Lou Gehrig’s disease), GBS does not attack the spinal cord or brain.
The patient is fully aware of what is going on, but is unable to move or communicate. The pain is excruciating as frayed nerves become hypersensitive to the slightest touch or air movement.
Treatment involves removing and cleaning the antibodies -- lengthy processes similar to kidney dialysis that must be repeated up to 10 times per round of therapy.
* * *
Yelkin remembers the moment he thought something wasn’t right in the early morning of Dec. 12, 2012.
“I felt some tingling in my toes. It woke me up. It felt like my socks were too tight,” he said.
His toddler, Logan, was just getting over a respiratory infection, which he had shared with his mother, Sarah Yelkin.
“I figured that’s what I had,” he said. A visit to the doctor confirmed the respiratory infection, and he was placed on antibiotics.
Meanwhile, the tingling spread to his fingers and hand. He called the doctor, who told him not to worry about it.
That was on a Friday.
“Saturday I woke up and told my wife we had to go to the emergency room. I could barely go up and down the stairs,” Yelkin said.
The doctor sent him home, telling him the respiratory infection just needed to run its course.
“By Sunday I was worse,” he said. They returned to the ER -- this time refusing to leave until they had an answer.
It all happened frighteningly fast.
“I ran five miles on the Tuesday before it all started. One week later I was paralyzed from the waist down,” Yelkin said.
Six days after that, Dec. 26. 2012, his lungs shut down. He was intubated and placed on a ventilator.
That moment continues to haunt him.
“I remember the look of fear on their faces,” he said, referring to his wife and son. “I had this thing strapped on my face. I looked like Darth Vader. … At that moment, I had to figure out how to go forward.”
He spent 1½ months in the hospital and another two months at Madonna. Upon his return home, he continued outpatient therapy five days a week.
Things started turning around.
Still, it was painstakingly slow.
“At the end of May last year, I was still in an electric wheelchair,” Yelkin said. “I could stand up -- but barely.”
By June, he was back at work and using a wheelchair. By mid-July, he hardly needed his cane.
Yelkin considers himself 80 percent recovered. He still has a lot of pain in his feet and calves. But he refuses to let GBS win -- he’s running, playing basketball and doing all the things a father of a 2½-year-old does.
“I may never be 100 percent,” Yelkin said.
* * *
NIH statistics show that 80 percent to 90 percent of GBS patients recover. Thirty percent will have residual deficits, Delgado said.
Recovery can take up to two years.
The first thing to go is the last thing to recover, Delgado said. Like a baby learning to hold its head, sit up, crawl, walk and feed itself, everything has to happen in a certain order, she said. The brain must reteach the muscles and nerves that go to the muscles.
For patients and families, it is grueling and discouraging.
“It is very hard not to give up when you don’t see improvement as fast as you do with other diseases,” Delgado said. “There is always hope, but the process is long -- especially the older you are.”
Scott Clubine knew he could die but was determined that he wouldn’t.
“My worst nightmare was being intubated,” Clubine said. When that happened, it shook his resolve.
The moment of clarity came when his 4-year-old daughter visited him in the intensive care unit. The preschooler was warned in advance that daddy couldn’t move, that his body was sick and that all the machines were helping him.
“She was scared for about 10 seconds,” Clubine said. “Then she climbed on the bed, took my arm and put it around her, laid down and started rubbing my chest, saying, ‘You are going to get better, Daddy.’”
That was the moment that convinced Clubine dying was not an option.
“I said I would get better regardless of the odds,” Clubine said.
He was on the ventilator for nearly two months. The day he was taken off was the first time he felt like he was really getting better -- although moving independently was a long way off.
He returned home Dec. 15. He continues to have physical therapy in Arkansas but is frustrated that it is not as comprehensive as what he received at Madonna.
"I walk fine. My feet hurt, my hands tingle. I have a little bit of a foot drop. I take 16 pills a day, but my kids don't even know that I'm sick."
He's confident he will continue to improve.
Tiesha Scipio has had her fair share of ups and downs. Three times she has begun to regain movement only to have GBS return with a vengeance. Her last relapse was earlier this month.
“I was walking with a walker. My hand was getting better; I could stand longer,” she said. “Then I noticed my ankle was getting weaker. All of a sudden I couldn’t move it. I noticed that some of the exercises I had been doing all along I couldn’t do at all.”
After another five days of treatment in which the antibodies were removed from her body, she had turned the corner again.
She feels the best she has since getting sick and is hopeful she is finally on the mend.
“Two weeks ago, I was not walking on my own, even with my braces,” she said.
Now, she’s walking with her braces -- and sometimes without.
April 12 is her projected release date. Before that, she and her physical therapist, Matt Ulmer, are gearing up to run/walk the GBS 5K.
“I’ve been telling my body it is time to get better, and it better start listening,” she quipped.
"I want to go back to school in July. My goal is to be independent again. I want my life back to normal -- I want my life back period.”