Patient Stories

By Patrick Bohan Over 13 years I have had nine neurologists evaluate and retake my medical history. Whenever diagnosis is elusive, having a medical history retaken by different doctors is not a bad idea. After all, a fresh set of eyes may uncover important information. [1] Over those 13 years I have had 4 different…

I am Filip and I have CIDP. The first real symptoms I had of CIDP were when I had difficulty standing up straight without any support. This rose a concern and after several tests it was determined that, I had either Guillian Barre Syndrome or CIDP. After two rounds of a five-day cycle of immunoglobulin,…

I am Marion and I was diagnosed with GBS. It all started when I was cleaning the house and the feeling of pins and needles took over my body. By the next morning, when I went to the doctors, my fingers and toes were completely numb. After several tests, different diagnoses, and numerous doctor appointments,…

My name is Babafemi and I was diagnosed with GBS in 2011. In a matter of two days, I started feeling numbness in my fingertips, toes, and weakness in my knees. Within a week, I was paralyzed. I was diagnosed with GBS at a time in my life that was supposed to be happy. I…

My name is Alejandra and I have CIDP. It all started in 2006 with a bad flu. I was working 16 hours days and was having problems with my legs. I pushed through and it wasn’t until my hands became paralyzed that I went to the emergency room and was possibly diagnosed with Guillain Barre…

In 1998, my sister and I were both diagnosed with GBS. After a misdiagnosis and three hospitals visits, it was finally determined we had Guillain-Barre Syndrome. At the time, no one knew about GBS. You would hear of people who recovered and people who have not. The internet was very new at the time so…

My illness all started with muscle stiffness and numbness in my legs. By the time, I received a lumbar puncture; I was already in critical condition and placed on a respiratory machine. Everyone thought it was a spinal disc herniation and that the condition would never become critical. Little did they know that they were…

My name is Crystal and I have CIDP. My journey with CIDP started a year before I was diagnosed with memory loss and severe fatigued. At the time, I was working a job that required a lot of energy and I was finding myself really struggling with my everyday tasks. I chalked it up to…

It all started when I thought I was diagnosed with Guillain-Barre Syndrome many years ago. After making a reasonable recovery, I continued on to live my life to the fullest only to find out that my health issues had just begun…Fifteen years later, I started falling and experiencing severe pains in my back and legs….

My journey with CIDP begin in 2006 when I returned home from a trip in South America. Two months after returning, I began walking a little strange and noticed I was getting weaker and more tired. I soon saw a neurologist, which began the 10-month diagnosis of CIDP. I did all the routine tests and…

Growing pains was my first diagnosis after I was experiencing weakness and tingling in my feet. I was shocked that growing pains was the reason behind the pain I was experiencing. After going away for a weekend, the pain become unbearable and I was beginning to not be able to walk. I was rushed to…

I was just five years old when I was diagnosed with GBS. It all started when I began falling and not being able to walk properly. I was an active five-year-old so my parents knew right away something wasn’t right. I was later taken into the hospital and a few days later diagnosed with GBS….

In March of 2013, I was a normal kid. Having just turned 10 years old, I was a ball of energy: always dancing and running around. My dreams of being a principal dancer were in full swing, and I was sure nothing could take that away from me. In April of that same year, this…

“Will power and strong determination in our mind and heart can achieve every success that seems impossible” – Saishna Budhathoki Today, we share a story from Nepal. Meet 18-year-old, Saishna Budhathoki, a young woman who shares why she believes, “smiling really heals the greatest edge of pain.” I began my battle with Guillain-Barre Syndrome when…

“Volunteers from the GBS|CIDP Foundation, visited my friend Morgan in the hospital. I know that made all the difference in her recovery. She was very motivated and in very good spirits after the visit! We are so grateful!” – Virginia Vassalotti We are happy to introduce, friend and advocate, Virginia Vassolotti, and GBS patient Morgan…

“When you love something you do it until you can no longer do it.” After enduring a young adulthood (1996 -2001) of spinal stenosis, back surgeries (including a laminectomy and spinal fusion), and multiple knee surgeries, alongside many painful periods of recovery, Alex Biagi was back in shape and back to his old normal –…

Judy Jacobs is one of “the original 8” – a passionate circle of 8 people lead by the most passionate of all, the founder of GBS|CIDP Foundation International, Estelle Benson, and a group whom Dr. Arthur Asbury from the University of Pennsylvania, deemed as “the missing piece.”  This summer at the GBS|CIDP headquarters in Conshohocken,…

Recently we had the privilege to connect with Trent Fielder and learned why and how he continues to challenge himself both physically and mentally, and why he believes,  “We all have the ability to inspire if we live our lives with our spirit first.” Here’s what he had to say: When were you diagnosed? 12/16/2011…

“Everyone of us experiences GBS in a different way, but what we primarily share is our determination.” – Hala Ahmed Learn how this pediatric dentist from Egypt coped with a GBS diagnosis, from onset to treatment, to finding the support she needed at the GBS|CIDP Foundation International.

Meet GBS member Nancy  DiSalvo, a tireless international volunteer for the GBS|CIDP community, and learn why she feels “each small accomplishment is a major victory.” We sat down with Nancy at our 2017 International Liaison Meeting in Amsterdam. Here’s what she shared about her experience with both GBS, and CIDP. The morning of November 8,…

In 1999 when the neurologist said to me, “You are suffering from a Sensory and Motor neuropathy also called Lewis-Sumner Syndrome or MADSAM [a variant of CIDP], a disease with prevalence estimated at between 1 and 9 cases per million.” I was 30 years old, and I didn’t realize at this moment would change the…

A New Outlook on Life 2016 was the most memorable year of my life. I had finally finished high school, I had gotten my first car, my first job, and my mum’s business was thriving. This year was also when I had been diagnosed with GBS. What had started as an amazing year ended as…

“You are not your legs.” – Karani Kinyua. Meet the first member of our International Volunteer series, Karani Kinyua from our GBS Chapter meeting in Kenya. Listen to Karani’s story of perseverance and resilience in the face of adversity as he battled GBS (taped at our 2017 international liaison meeting in Amsterdam).

“My name is Dr. Gupta, and I am a neurologist. You have a rare condition called Guillain-Barré Syndrome. I am going to be honest with you: there is a very real chance you will not survive the week. I am admitting you to ICU, we need to act fast.” This was March 26th, 2016, the third time in…

94 days. I had gone 36 years since I last spent the night in the hospital. That all changed in 2015. I had been infused about a 100 times since 2013 at the Mayo Clinic. But, I just wasn’t right. Shooting a basketball on Christmas Day 2014 I lost my balance and fell to the…

I am not sure where to start with my GBS journey, so I will begin where my family’s life was changed forever.  It was Memorial Day weekend 2013; I had just got back from a week’s vacation to Destin, Florida.  I was sitting on my dock watching the grandkids ride their jet ski.  I was…

My name is Corbin. I’m fifty-six years old, I’ve been married for thirty-three years, have two grown and successful sons, a successful daughter in law, two grandchildren and a dog named Luke. In May of 2012, I was an executive engineer in charge of a global team of scientists, engineers and technicians who developed technical…

Hi, my name is Christa and I am 27 years old, and my journey started in 2013.  I had started a new job and noticed intense fiery pain in both my arms.  Instantly I thought, “maybe it’s carpal tunnel” and so my long arduous trips to the doctor began.  Eventually I was sent to a…

In 2011, I was stronger and healthier than I had ever been in my life.  My youngest son, Benjamin, had been diagnosed with leukemia late in 2009, and by mid-2010, I had stress eaten to my highest weight ever, and my husband and I decided that for my health and well-being, starting an exercise routine…

My name is Debbie Buckley and my GBS story started 6 year’s ago in February of 2010.  I was a very healthy active 53 year old mom of 3 grown sons.  I exercised on a daily basis, ate healthy and really worked hard at trying live a healthy lifestyle.  I always assumed that if you…

In my time at the Foundation I have had the honor of compiling & sharing your stories of unwavering strength & resilience in your personal journeys. If it’s okay – today I’d like to share mine with you. How do you measure the quality of your life? Is it in the experiences? Your monetary value…

In 1978, my husband Dave and I were living in Germany and we had three young children, Paul 3 years old and our twins Jeremy and Matthew who were only 10 months old.  At that time, I was struck with a rare virus which drastically changed our lives. Because of this virus traveling throughout my…

My name is Amanda Guerrero.  Back in 2011, I was 24 years old, was living in an apartment with a friend in Santa Monica, and just starting my career as a Neonatal Intensive Care nurse at UCLA Medical Center.  I was in the prime of my life.  This was all about to change.  On November…

Chapter 1 – 4th of July, No Asbury Park On the 4th of July weekend in the summer of 2013, I woke up extremely tired with leg pain. Being tired was nothing new to me. I make frequent trips to Asia, typically at least nine times a year so jet lag is pretty much a…

On the night of November 16, 2012 I was driving an hour south of my hometown to a Carrie Underwood concert.  During the drive my feet began to feel tingly, like they were falling asleep.  The entire night through the concert I tried to wake my feet up, but no luck.  Foolishly, I thought this…

One morning in June I woke up and the last two fingers on my right had were numb.  Like most people I thought that my fingers would “wake up”.  The next morning the last two fingers on my left hand were numb, again I thought they would “wake up”.  Unfortunately they did not.  I called…

My name is Aledawi Figueroa, but everybody calls me Widy. I am from Isabela, Puerto Rico. I’m currently 34 years old.  I am happily married with my husband Obeth Soto.  We have 2 children, Alanis Valeria who is 7 and Obeth Julián who is 1 year old.  I studied Business Administration, majoring in Industrial Management…

Guillain Barre in 1996 By Ann Brandt Things in the world of GBS have changed since my adventure in 1996-97. I had been grading papers all afternoon, rubbing my neck and right shoulder every few minutes. Thinking I needed some exercise and time away from my desk, I set out on a brisk two mile…

BREAKING OPEN Bob Shea’s Story Life can break you or it can break you open. It is one of my favorite sayings, and it is something everyone who has suffered from Guillain-Barre Syndrome (GBS) knows well. I was diagnosed with GBS on September 19, 2002, and I endured a series of physical challenges: total paralysis;…

My story started while I was vacationing in Thailand. I was 26 years old and it was my first trip all alone. Peter, an old college friend of mine, lived there, so I was going to visit him. I wished to see the world and to prove to myself my independence. I arrived in Bangkok…

Once upon a time, there was a woman who used to live a normal everyday life. Then in November 2008 after my daughter received the flu shot, (at her 9 month check-up) everything came crashing down. Two weeks after her receiving the flu shot, my arms were so weak I almost dropped her down the…

“I’ve never seen anything like it,” her daughter’s pediatrician said. Holly was at once shocked and frightened by what she heard. Testing was inconclusive, but a neurologist had a hunch… When your trusted family doctor doesn’t know, anxiety can stop you in your tracks, or it can push you to action. For Holly, she sprang…

My journey begins in October 1967, the year I was born. I was a child of two college students who wanted nothing but the best for me. Their love for me allowed me to be put up for adoption. Twenty-eight days later, I had a permanent home. My life with CIDP began in December of…

The old adage “when life gives you lemons, just make some lemonade” has been a byline for Laura Dodd almost her entire life. At the young age of 12, Laura was diagnosed with a rare neurological disorder, CIDP, a condition similar to multiple sclerosis. The result was several years traveling from a wheelchair, to a…

On August of 2013, on the 18th, Kyle was engulfed, suddenly, in a fight for his life. An illness that we could not pronounce laid claim on him, and with a velocity and a determination that numbed us, he staggered…staggered….and descended far below the earth. He came to a standstill. Within four days those lungs,…

Alexis was 2 years old when she was affected by Guillain Barré syndrome a/k/a “GBS.” GBS is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. Alexis started out with an ear infection and a few days later was unable to walk. We rushed her to the ER where, after a…

From early adolescence, I knew that my destiny in life was to be an independent woman. As a child of the Fifties, that meant, for me, not being dependent on a man for my livelihood or my definition of self. My first summer job was at 14 years old, and I left home for college…

Friday, March, 2, 2013 was my last normal day. I had been for a run on my lunch break that day. Saturday, I noticed some weakness/soreness in my legs and didn’t think much of it. On Sunday, my legs were noticeably much weaker. We took a trip to Costco that day. I had my wife…