Fall 2016

With every dollar we are able to allocate to research, we are one step closer!

This year, we are pleased to announce the Estelle Benson Volunteer Award
for Research has been awarded to Bart C. Jacobs, MD.
We are privileged to be the recipient of Bart Jacobs’ brilliance. His endless curiosity
about “what is GBS, CIDP and variants,” has led to amazing research projects. Bart’s focus is on
the epidemiology, pathogenesis and treatment of immune-mediated neuropathies, especially
Guillain-Barré syndrome.
Bart has spearheaded the International GBS Outcome Study (IGOS,) which has more than 1,000 patients enrolled,
worldwide. He is an associate-professor of Neurology and Immunology at Erasmus University Medical Center, Netherlands.
We are honored to have Bart so committed to our GBS|CIDP Foundation International family.
It is only through the generosity of our sponsors that we are able to present this award, and awards to other individuals
dedicated to our mission pillars of support, education, research, and advocacy.
Thank you, and please recognize that…
This is your gift in action!

Patient Story

By Wenesday Ketron

Carrie Underwood was standing in a pickup truck suspended by wires, moving over the crowd and over my head, singing beautifully.  People all around me were singing along, smiling, and standing on their feet.  I was enjoying the experience, her singing, the setting, but I was sitting down.  I was weak and getting scared.  Something was very wrong with me.

I was a thirty eight year-old, healthy, full-time mom, attending the concert with my twelve year old daughter, Kayla, and my husband, Greg.  I had looked forward to accompanying Kayla to her first concert since giving her the tickets months earlier on her birthday.  I knew that if I couldn’t shake off the feeling of malaise in that venue, I wouldn’t be able to do so anywhere.  Despite the excitement, I still felt something was very wrong physically, so I communicated that to Greg.  We decided to leave a few minutes before the concert ended, trying to beat the mass exodus.

The stairs leading to the exit had never before looked so formidable.  I held on tightly to the railing, determinedly, but clumsily swinging each leg up each step.  It was very slow going.  I glanced at the line that was forming behind me, worried that people would think I was drunk.  All I saw was patience and concern on their faces.  It was obvious to everyone else that something was physically wrong with me.

My legs were weak, I couldn’t walk normally, my back ached, my extremities were numb and tingly, I was having difficulty going to the bathroom, my mouth tasted like a dirty copper penny, and I was uncomfortable.  On October 23, 2010, the day after the concert, I checked into the hospital emergency room.  During our fifteen minute wait, my husband, who had no medical training, began searching my symptoms online from his phone.  He told me he thought I had Guillain-Barre’ Syndrome.  We had never before heard of it.  The ER doctor ordered some tests and confirmed the diagnosis.

Later that day, my legs gave out and I collapsed onto the floor with a loud thump.  I couldn’t move my legs at all!  Before I could get any words out of my mouth, almost instantly, Greg was right there.  He’d heard my fall.  My mom had too, and she was screaming loudly for the nurse.  Greg looked at me compassionately and told me he was going to pick me up off the floor.  Terrified and wide-eyed, I said, “I can’t move my legs!  I can’t help you!  I can’t support any of my weight!  I don’t know if you can pick me up.”  So far, Greg had been helping me walk, but I’d been helping too.  He promised he could pick me up.  As he was lifting me, the nurse appeared.  The two of them got me back into the bed.  I couldn’t move my legs or even wiggle my toes!  The nurse said it was just a part of Guillain-Barre’.  This was my first taste of the real, serious, effects of GBS.  I was stunned.  They’d said this could happen, but I hadn’t really expected it.  It was awful!

Next, my face became completely paralyzed without my even being aware of it.  I heard the nurse say something to Greg about me starting to decline more rapidly.  I was suddenly terrified.  This perpetual optimist was feeling anything but optimistic.  What else could go wrong?  I started to cry as I was moved, still in the bed, to the Neurological Intensive Care Unit (NICU).

I’d lived a fairy tale life.  I’d always dreamed of having three children.  When I got sick, I was a full-time mom with an eleven year-old daughter; a one year-old daughter, who I’d stopped nursing only a few months earlier; a twenty four year-old stepson; and a loving husband.  Getting sick had never been in my plans, and there was no back up plan for how to take care of my youngest, who had never been enrolled in day care.

I spent thirty three days in the hospital.  I will remember those thirty three days for the rest of my life.  I was completely dependent on others to keep me alive.  I had to relearn how to sit, stand, walk, talk, and even eat.  Everything I had taken for granted in life took on a whole new meaning.  I had never before been so filled with overwhelming fear, excruciating pain, and deep sadness; and later, immense joy and incredible gratitude.

Today, I am left with tingling toes, a changed face, and a deep appreciation for life’s blessings.  I can walk, run, and climb.  I can use the bathroom by myself.  My external smile is not symmetrical or full, but has progressed to the point that it is obvious when I am smiling or frowning.  When I make a kissy face, I feel the muscles in my face strain, but I am able to give and receive kisses.

I treasure the extra time I get to spend with my family.  I savor the sounds of my youngest daughter’s giggles, treasure the bond I have with my oldest daughter, and rejoice over the friendship I have with my bonus son.  I am in awe of my children’s beauty both inside and out, and I am thankful for my devoted husband, my rock through it all.

I wrote and published a book about my experience called “Geeyahn What?  My Guillain-Barre’ Syndrome Survival Story.”  It was my hope that the book might bless others, and I am told that it indeed has.  I am an official liaison with the GBS-CIDP Foundation International, and have the opportunity to visit newly diagnosed patients in the hospital.  I almost always physically jump up and down in front of a newly diagnosed person.  That way, they can see that there is hope and that there is sunshine after the rain.  When I was hospitalized and terrified, other survivors visited me; now, I am paying it forward.  I feel blessed.