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Sharing your story and experience as a patient or caregiver can truly inspire other individuals with these rare conditions. The GBS|CIDP Foundation invites you to join patients of all ages, caregivers and heros who have contributed their experience and inspire others living with GBS, CIDP, MMN and related conditions.
Check out some tips below to help you share your story.
If you would like to be included, please submit a story. We would love to hear from you & share your journey!
Clive Phillips
January 4, 2023
Ajay Singh
December 1, 2022
My Journey through “Guillain Barre Syndrome” (GBS) “It’s nothing serious, few physiotherapy sessions and you’ll be okay,” my GP told me when I started to feel the pain in my toes. Seven days were spent in physiotherapy, and by that time, I was not feeling better, so I gave up and continued with my daily routine….
L’histoire de Patrick
October 4, 2022
Lori Basiege
April 22, 2022
Many of you know me because I have responded to your patient inquiries either by phone, email, or have conversed with you virtually, at in-person regional meetings or symposia. I have been with the Foundation for seven years, and quite frankly, it has been easier to consult with many of you than for me to…
Bob Whiteside
March 2, 2022
My GBS journey started on April 29th of my 60th year. I received my 2nd COVID vaccine shot the day earlier with no complications. I cut the grass and walked with my wife. I went to work the next day, but didn’t feel right so my boss sent me home. I went to bed figuring…
Jennifer Burgand
February 22, 2022
I have been showing a positive “face” for quite some time now and life hasn’t been exactly rainbows and butterflies the past 6 years. Around the same time I was diagnosed with breast cancer, I was having horrible cramps in my right calf & toes. Doctors kept saying “You’re so active. You’re just dehydrated. Eat…
Pete Morro
September 1, 2021
Early 2016, I noticed numbness in the soles of my feet, someone suggested “cool laser “treatments. After 15 appointments with no results, I gave it up. I was kayaking, riding my bike along trails, playing with a band. I was 81 years old. My wife and I celebrated our 25th anniversary on 8 August 2017…
Trevor
June 24, 2021
During the month of November 2011, I had a bad case of food poisoning. After a visit to my doctor, I was prescribed with an antibiotic, which seemed to be helping until the antibiotic was over and the abdominal pain and fever had returned! After being prescribed another antibiotic, I tried to return to my…
Sara Ganem
June 14, 2021
On August 30th, 2019, my life changed forever. I woke up that morning and collapsed, and suddenly was unable to walk. Within 24 hours, I was paralyzed from the neck down. Since that day, I have been battling Guillain-Barré Syndrome. GBS paralyzed me from the neck down, put me in the ICU and caused me…
Beto Dávalos
June 14, 2021
My name is Beto Dávalos, I am 21 years old and I am from Ecuador. I am a trail runner, at least, that is the word with which I usually introduce myself, although I feel that it does not pay 100% homage to everything I do. I practice andinism (mountaineering), trekking and I am also…
Christopher Cross Research Fund
May 27, 2021
CLICK HERE to Join Christopher Cross in Supporting Research
“Diagnosis is Not Destiny” Barry Shore
April 30, 2021
Forever Grateful for my Husband
January 14, 2021
When I first got sick in 2014, I knew that my life and the life of my husband would change forever. I wasn’t sure of exactly how that would be yet. As time went on, we couldn’t be spontaneous anymore, travel had to change and my accommodations were different. Everything took a tremendous amount of…
My Fiancé, My Hero
December 9, 2020
I would absolutely adore and be incredibly grateful to honor my fiancé, Adam Coleman, as an amazing, loving, and supportive caregiver. As of my GBS diagnosis in January 2018, I am still trying to process life in my “new normal” and have been battling with incessant, overwhelming, and life-changing residual effects from my diagnosis. My…
Caregiver Q&A – Elsa Oliver, Richmond Liaison and Walk & Roll Chair
December 2, 2020
What is the most rewarding part of being a caregiver? The most rewarding part of being a caregiver has been watching our relationship blossom into something deeper than love. Taking care of someone you love is very difficult but, the bond we have now is like nothing I have ever known and he knows that…
Puja Shankar
October 9, 2020
“I need to be admitted, I think I have Guillain Barre Syndrome” I stated confidently and somewhat shakily to the receptionist in front of the Emergency Department; this was ironically the same department I rotated in a month prior to my current presentation. She looked at me quizzically and I showed her my employee badge….
Merrilyn Macurak
August 26, 2020
Merrilyn Macurak, Southeast Regional Director & Walk & Roll Chair tells her story to Tim Beisiegel, on the Focus on Forward Podcast. Listen as she shares her experience with GBS, finding support and an “extended family” at the Foundation, and how she tries to stay active and positive every day.
Living Each Day to the Fullest
July 28, 2020
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…
Filip’s Story
July 15, 2020
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,…
Marion’s Story
July 15, 2020
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,…
Babafemi’s Story
July 15, 2020
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…
Alejandra’s Story
July 15, 2020
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…
Juan Antonio’s Story
July 15, 2020
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…
Adrienn’s Story
July 15, 2020
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…
Crystal’s CIDP Story
July 15, 2020
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…
James Babington Smith
July 15, 2020
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….
Chen Rosenberg
July 15, 2020
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…
Mia’s GBS|CIDP Story
July 15, 2020
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…
Children with Guillain-Barré Syndrome
July 15, 2020
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….
Isabella Herman – My Story
July 14, 2020
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…
My Mom has CIDP – Marie and Louise’s Story
March 23, 2020
GBS Helped me Find Myself – Cheryl’s Story
March 23, 2020
Saishna Budhathoki: #nevergiveup
February 3, 2020
“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…
A Little Support Can Go a Long Way
September 16, 2019
“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…
Meet Alex Biaggi
May 8, 2019
“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
January 7, 2019
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,…
Meet CIDP Patient and New Orleans Iron Man, Trent Fielder
December 6, 2018
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…
Meet Hala Ahmed
August 7, 2018
“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.
Overwhelmed with Gratitude
May 28, 2018
By Brian O’Connell May 23, 1998, I was preparing for my last cross country commute, ending an era that started six years before, when I was hired into my dream job, as a pilot for a major US airline. With a three year layoff, two years of a coast to coast commute and the hardships…
A GBS Hero from the Peace Corps
May 24, 2018
By John Pielemeier It was Christmas Eve, 1967, and I was a Peace Corps Volunteer in Katiola, a small town upcountry in the Ivory Coast. I began to feel ticklish sensations running up and down my legs. I instinctively knew something was seriously amiss and got up in the middle of the night to find…
Making Lemonade from Lemons
May 22, 2018
By Julie Zarou My son Taylor was diagnosed with Guillain-Barré Syndrome (GBS) in June of 2016. At the time he was 7 years old and school was about to end for the year. He was so excited for summer to begin. He was hospitalized for 3 weeks and misdiagnosed with acute lyme disease and post-strep…
My Daughter and GBS Hero
May 20, 2018
By Diann Mayweather Her name is Dr. Diana Nicole Mayweather, a Ph.D. Chemistry graduate from Northwestern University in Evanston, Illinois. Diana is my daughter and this is her journey with GBS through my eyes. I would like to start with some background information on Diana. She lived in Chicago, Illinois until graduation from Northwestern (June…
My seven year old son is my HERO
May 18, 2018
By Felicia Jones It was around Halloween of 2017 when we noticed Benjamin was more fatigued, cranky and just not acting himself. He would sleep as soon as he came home from school and was complaining of aches and pains, mainly located in his legs. Originally we thought the clumsiness and leg pain was a…
My Hero and Caregiver
May 16, 2018
By Arthur Gause My ‘Honor Your Hero’ story is about my wife Dee. She is my caregiver. By the time I was diagnosed with CIDP in 2015, I was wheelchair-bound. Getting an appointment with a Neurologist was a challenge. It took 5-6 months after onset of the symptoms to see one. Because of her hard…
I Will Tryout for Cheerleading Again!
May 13, 2018
By Nancy Mallard At the age of 14, and just starting her freshman year in high school, our daughter Rachel came down with GBS. October of 2015 is a time that will always be etched in my mind. She was on a ventilator for 3 weeks, spent a month in MUSC Children’s Hospital, a month…
Life is Good
May 10, 2018
By Robert Neuenschwander My hero is my wife, Kathleen, who has also been my caretaker. CIDP hit me in September of 2013 and within two and a half months I was almost totally paralyzed. I could move my head and neck but nothing else. Kathy got a lift and slings and every morning got me…
“It’s Only Rare Until It’s You”
May 9, 2018
By Kenneth Curitore My hero is my partner Raymond Lopez. Raymond is a 1988 GBS survivor who following his long 10 month recovery, regained control of his life and in doing so today recognizes the importance by example of helping fellow GBS/CIDP survivors. Through his dedication and work as a liaison for GBS/CIDP Foundation International…
My Hero, Husband and Soulmate
May 7, 2018
By Linda Pulver My hero is more than a hero he is my angel, soul mate, my husband, Russell Barber. On January 2, 2004 just after turning 60, I started having GBS symptoms. By January 7, I was in an ambulance being transported from Hornell, NY to Strong Memorial Hospital in Rochester, NY. That was…
My Husband is my Greatest Cheerleader
May 4, 2018
By Laura Finley My hero is my husband, Michael. I was diagnosed with GBS in May of 2017. We live an active lifestyle and I was an avid runner training for a marathon when I became suddenly ill. I am a RN by profession and I knew something was terribly wrong with me. I went…
Mom will always be my Hero
May 3, 2018
By Christine Robinson My story goes back to 1965, when I was 5 years old. I am told I walked up to my mother and she was talking to her mother and asked, “Is Christine’s face supposed to be different on one side?” That observation lead me to being hospitalized for what they thought was…
A True Fighter!
May 2, 2018
By Ileana Yau On July 17, 2013 I wrote to the GBS Foundation requesting information as my father was diagnosed with GBS at 87 years of age. Today I am writing to “Honor Your Hero” as my father has fought and recovered very well! He made enormous efforts to recover and he did everything he…
My Wife, Caregiver and GBS Hero
May 1, 2018
By Jim Yadlon My name is Jim Yadlon and I am Recovered GBS patient. My battle with GBS was a long time ago, 1973-74. But one never forgets the gist of time with GBS even though I have forgotten some of the smaller details. One important detail that I will never forget is the love…
My Dad is My Hero
April 27, 2018
By Chelsea Ray My Hero is my Dad. He is a hard working police officer and Christian man. He has always been by my side supporting me and taking care of me whether it’s driving me to the doctor, picking up my medications, or helping me with anything else that I need. When I was…
Nancy Di Salvo’s Story
March 22, 2018
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,…
Paige Duffy’s Story
February 16, 2018
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…
Karani Kinyua’s Story
January 30, 2018
“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).
Michael Coleman’s Story
August 8, 2017
“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…
Tom’s Story
May 2, 2017
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…
Alan’s Story
December 9, 2016
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…
Corbin’s Story
October 11, 2016
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…
Christa’s Story
August 17, 2016
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…
Alethea’s Story
July 21, 2016
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…
Debbie’s Story
May 16, 2016
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…
Kelly’s Story
April 13, 2016
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…
Mary’s Story
March 17, 2016
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…
Amanda’s Story
February 1, 2016
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…
Allen’s Story
January 4, 2016
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…
Bridget’s Story
December 5, 2015
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…
Chris’s Story
November 5, 2015
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…
Widy’s Story
October 7, 2015
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…
Ann’s Story
September 22, 2015
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…
Bob’s Story
May 6, 2015
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;…
Sibylle’s Story
March 13, 2015
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…
Kim’s Story
January 7, 2015
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…
Hailey’s Story
October 2, 2014
“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…
Julie’s Story
October 2, 2014
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…
Laura’s Story
October 2, 2014
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…
Kyle’s Story
September 23, 2014
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’s Story
September 23, 2014
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…
Peggy’s Story
September 23, 2014
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…
Tyler’s Story
September 23, 2014
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…