Ruston native speaks out about rare syndrome

Everyone has a story. For some, their story involves romance and happy times, and for others, their story is one about overcoming adversity. No matter what the story is about, everyone has a story that should be told.
Shane Sumlin is no different. Sumlin is a Ruston native who was diagnosed with Guillain-Barre Syndrome. According to gbs-cidp.org, Guillain-Barre Syndrome, or GBS, is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. This syndrome is also known as Acute Inflammatory Demyelinating Polyneuropathy or Landry’s Ascending Paralysis. GBS is characterized by the rapid onset of numbness, weakness and often paralysis of the legs, arms, breathing muscles and face. The paralysis is ascending, which means that it travels up the limbs from fingers and toes towards the torso. There are no warning signs of Guillain-Barre Syndrome, and Shane Sumlin learned this the hard way.
“I’m a fairly healthy guy,” Sumlin said. “I wasn’t overweight, I went to the gym and exercised regularly; I was just an average guy. Not long before I suffered from GBS, I had the flu and that was how I ended up with it. The virus looked at my peripheral nervous system and it started to attack.”
Sumlin said he woke up on the morning of Nov. 28, 2011 and felt fine. When his feet hit the ground he said he felt a little weakness, and that weakness continued to grow over the next 24 hours.
“It all happened so all of a sudden,” he said. “I woke up on Monday with a little weakness, and then I woke up the next day and I was paralyzed.”
On Nov. 29, Shane’s wife, Kristy, took him to the hospital in hopes of finding out what caused this to happen. This is a drive that no spouse wants to take, and it led to a conversation that no loved one wants to have.
“On the way to the hospital I knew I had to talk with God and my wife,” he said. “Kristy and I talked about how this could either lead to something tragic or it could be a great story. That’s why we started documenting everything closely from the very start.”
While Sumlin said the whole situation was very frightening, he knew he had to tell his story.
“I want to raise awareness about this syndrome because it’s really scary,” he said. “When the doctors told me what was wrong with me, we had no idea what this syndrome was. There wasn’t, and still isn’t, much research or information about this.”
Sumlin’s story is one of faith and overcoming an obstacle that some thought he would not get over.
“If we’re looking at a textbook definition of this, I probably shouldn’t be where I am today,” he said. “The doctors didn’t know if I would be able to walk again, but here I am walking and on my way to getting back to normal.”
While Sumlin still has a ways to go, he is slowly returning back to his old self. The journey was not an easy or short one, though.
“It took me a little over a year to be able to walk again,” he said. “I spent 77 days in the hospital, and I’m blessed to have had my wife with me there for 75 out of the 77 days.”
Sumlin said his road to recovery tested his faith, but because he stood strong he is where he is today. Before he could walk again, he first had to be wheelchair bound, and then had leg braces, a walker and a cane before he could walk alone without assistance.
“I logged in over 1,000 hours of rehab,” he said. “My wife and kids were by my side every step of the way and I am so grateful for that.  I’m walking because of the faith that I learned while living in Ruston. I owe credit to my faith, my family and my friends.”
Sumlin said while he is the one who suffered this tragedy, his wife is the real hero of the story.  “She was with me every step of the way,” he said. “She stayed with me nearly everyday in the hospital, she fed me, clothed me and bathed me. I wouldn’t be here without her.”
He said five years later he is finding his purpose in all of this.
“My purpose now is to give people hope,” he said. “Any event like this can change you. When you’ve been wounded it helps you understand where other wounded people are mentally and spiritually. Telling my story is what I am called to do. I’m still trying to figure this out, but I want people to know that I am there for them.”
Sumlin now serves as a local GBS liaison through the GBS/CIDP Foundation and serves on the foundations board of directors.
“Our job on the board of directors is to carry out the mission of the foundation,” he said. “Our mission is to support people who are suffering or have suffered from this syndrome, educate the medical field and patients, work on researching this syndrome and to advocate for the patients. We have to go out and give the people a voice when they might not necessarily have one.”
Today, there is still not much information about Guillain-Barre Syndrome and that is why Shane Sumlin is working to raise awareness for this syndrome. He believes everyone has a story and his story includes this syndrome and advocating for those who have also suffered from this.
GBS is a rare syndrome and no one has to go through this journey alone. For more information about Guillain-Barre, you can visit gbs-cidp.org.

 

This originally appeared in The Ruston Daily Leader

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