- Case histories -
"Guillain-Barré and variants:
Real stories told by real people!"
Guillain-Barré syndrome and its variants attacks each patient individually, so reading real-life case histories can be extremely informative. Please share your story and help others struggling to recover. Each story is unique, and a tiny detail may be be the key to recovery that a patient across the globe is desperately looking for!
Share your story and experience the catharsis of getting it out of your system. If you'd like to add your story to my site, please email me. Need inspiration to get started? I've seen case histories in the form of poems, pictures, even songs and diaries dictated by patients, with photos detailing paralysis and rehab. Write from your heart, include as many details as you remember, and send in your story as an email or a Word document.
There are hundreds of Guillain-Barré victims out there.
Real people who've suffered, fought to recover and are now
using their lives in fun and productive ways.
Here are some of their incredible stories :
Courtney
GBS 2003
NZ
Courtney was struck by GBS as a five-year old. This is her story, written in her own words, on her experience with GBS and how she began walking again.
Thomas V. McGovern
GBS 05/97
(Az, USA)Thomas, a professor, became a student again, when he had to learn to cope with GBS and rehab. On Patience, Anger, Healing. A very descriptive account of how GBS can create chaos in a life, and require treatment and lengthy rehab. 380 days later he was teaching again.
Photos. Recommended reading for patients, families and healthcare professionals.
Van Brown
GBS 09/00
(USA)Van was a week short of 41 when he got GBS. 3 years later, he has recovered successfully. Read his honest and insightful case history for inspiration and advice.
David Lim
(Singapore)Just 2 weeks after an attempt to scale Mt. Everest, Dave was paralysed with GBS. Read about how he fought to recover, clinging to the hope of pursuing his passion for climbing again. [PDF file].
GBS 6/98.
Lyndsi Graf
(USA)Lyndsi Graf was just 20 months old when she suffered from GBS. Massive pain and autonomous problems but no paralysis caused doubt about the diagnosis. Lyndsi got better, thanks to IVIg and medication, and is almost fully recovered today.
Suzanne Goodwin
GBS '01
CA, USA
Suzanne was one of the few who are stricken with the acute form of Guillain-Barré, losing control over her body within a matter of hours. Several years later, she still suffers from post-GBS residuals...
Simon Ludgate
(Canada)Simon suffered from GBS/CIDP in 1993, as a 12-year old, after a meningitis vaccination. Parents and health care professionals - read this story to understand how children may experience the slow onset of paralysis. Today, 23-year old Simon is cured of CIDP. GBS 10/93 CIDP 05/94.
Kristen Hackler
GBS '05
Kristen suffered from weakness. During PE, her heart stopped. Faced with living in a wheelchair, she got up and walked!
Debbie Ojala
(USA)Received no treatment for her motor symptoms. One year after being diagnosed with GBS, she had recovered 98%, due to sheer willpower!!
Alex
(USA)13-year old recovered from suspected MFS. His parents feel certain chiropractic adjustments helped in his recovery. Read their advice on how how to get through the difficult times pro-actively.
Recommended reading for patients, family, HCPs.
Zoe
(UK)Zoe's dad went through severe GBS. On several occasions, his family, including 10-year old Zoe, was called in as he was not expected to survive. Today, Zoe's dad has made a complete recovery!
GBS 98.
Alex
(USA)13-year old almost completely recovered from suspected MFS. His parents feel certain chiropractic adjustments helped in his recovery. Read their advice on how how to get through the difficult times pro-actively.
Recommended reading for patients, family, HCPs.
Patrick Hill
(Canada)
GBS 03/03Patricks bout of GBS seemed fairly straightforward and recovery progressed well. However, he suffers from painful stiffness post-GBS...
Peter Nørlund
(Denmark)Pain led to severe paralysis and ventilation for 6 months. Loss of taste, loss of hearing, morphine-induced nightmares .. he's tried them all. Peter still has motor problems several years later, but continues to see improvement.
Written by a very brave young man, this is a must-read.
Webmaster
(Denmark)How the frustration of having a family member taken ill with a mysterious illness and no information available motivated me to start up this website, hold Denmarks first nationwide GBS-rally, and start up the Danish GBS Support Group.
Cynthia Contreras
(USA)Cynthias pre-teen has GBS, possibly CIDP. Read about the family's frustrations and considerations the illness has created. Do you have experience that could help them?
Bonnie Kistler
(USA)Bonnies husband Kenny has problems getting through the many post-GBS problems that plague GBS patients. Do you have experience that could help them?
Peg
(NZ)Peg is Jenny Murray's niece (see below). She describes how her family rallied around when her mother contracted GBS in 1997.
Jenny Murray
(NZ)Jenny started up a GBS support group for New Zealand after her sister came down with a mysterious illness called Guillain-Barre syndrome. Jenny has recently been honoured with the Queen's Service Medal for her work!
Peter von der Fehr (Denmark) Symptoms in his hands, feet and face were originally thought to be GBS but were later diagnosed as Peripheral Neuropathy (PN). Read the on-going journal that he and his girlfriend are sharing here: the nerve-wracking waiting for a diagnosis, the pain, the growing depression and distress....
Ubaid Seedat
GBS/03
(South Africa)
This determined 10-year old survived progressive weakness, intubation, forced inactivity, rehab and is now fully recovered! His mother writes movingly about the issues that parents go through when a loved child is taken ill with a mysterious illness. A must-read!
Natalie
MFS? '03
US
Bobbie's teenage daughter was never given a firm diagnosis. Read her story about how the family struggled through the bad times and came out victorious!
Cynthia Contreras
(USA)Cynthias pre-teen has GBS, possibly CIDP. Read about the family's frustrations and considerations the illness has created. Do you have experience that could help them?
Lyndsi Graf
(USA)Lyndsi Graf was just 20 months old when she suffered from GBS. Massive pain and autonomous problems but no paralysis caused doubt about the diagnosis. Lyndsi got better, thanks to IVIg and medication, and has now recovered.
Simon Ludgate
(Canada)Simon suffered from GBS/CIDP in 1993, as a 12-year old, after a meningitis vaccination. Parents and health care professionals - read this story to understand how children may experience the slow onset of paralysis. Today, 23-year old Simon is cured of CIDP. GBS 10/93 CIDP 05/94.
Jimmy Logan
(USA)2-year old Jimmy's original diagnosis of GBS was changed to CIDP. Doctors can't tell if he was born with the condition or acquired it later. On medication for this, and dependant on a ventilator, Jimmy nonetheless begins pre-school soon!
Alex
(USA)13-year old recovered from suspected MFS. His parents feel certain chiropractic adjustments helped in his recovery. Read their advice on how how to get through the difficult times proactively.
Recommended reading for patients, family, HCPs.
Mary Williams
(USA)Mary survived the simultaneous onslaught of GBS, Bells Palsy, pregnancy and a car crash! Read about her experiences, and about her baby.
Anna Matthews
(NZ)Original diagnosis of GBS was later changed to CIDP. Pregnant during GBS attack. Pain and motor symptoms seem to be increasing with time, and PE does not appear to help.
Ken Sawyer
PDN/MGUS '98
UK
Kens original diagnosis of CIDP was later changed to Paraproteinaemic Demyelinating Neuropathy (PDN), a very rare form of chronic GBS also known as Monoclonal Gammopathy of Unknown Significance (MGUS) in the US. Ken describes his disorder minutely, and has several informative websites on the disorder.
Dennis C.
CIDP/2004
(US)
Dennis details the issues he had to deal with, when he contracted CIDP. A glimpse into what life is like for some CIDP patients!
Vilma Clarke
(Australia)
CIDP/91Vilma had a hard time getting a diagnosis for her CIDP. She then started up a support group for GBS/CIDP, and later underwent surgery for her fingers that curled inward...
Milt Steele
(USA)Diagnosis of GBS was later changed to CIDP. Milt suspects heavy metal poisoning to be the reason for his GBS/CIDP, with sensory and motor symptoms. Several relapses. Milt has been through PE, IVIg, and tablet-based medication.
Healthcare providers and CIDP patients: Read about long-term treatment with IVIg/pheresis, and patient-managed treatment.
Molly Campbell
(Australia)Molly has CIDP and a number of associated issues, including problems with IVIg and PE, progressive muscle weakness, etc. However, she is determined to fight every inch of the way!
Alex
(USA)13-year old almost completely recovered from suspected MFS. His parents feel certain chiropractic adjustments helped in his recovery. Read their advice on how how to get through the difficult times pro-actively.
Recommended reading for patients, family, HCPs.
Lauri Lowen
(USA)
Read Lauris gripping account of how she learned to deal with disbelief, GBS/MGUS and other unusual diseases!
A must-read for health care professionals.
Simon Ludgate
(Canada)Simon suffered from GBS/CIDP in 1993, as a 12-year old, after a meningitis vaccination. Parents and health care professionals - read this story to understand how children may experience the slow onset of paralysis. Today, 23-year old Simon is cured of CIDP.
Anna Matthews
(NZ)Original diagnosis of GBS was later changed to CIDP. Pregnant during GBS attack. Pain and motor symptoms seem to be increasing with time, and PE does not appear to help.
David Cleal
(NZ)Developing Miller-Fisher syndrome (MFS) after Campylobacter-induced diarrhoea, David candidly describes the frustrations and joyous moments he experienced.
Jimmy Logan
(USA)2-year old Jimmy's original diagnosis of GBS was changed to CIDP. Doctors can't tell if he was born with the condition or acquired it later. On medication for this, and dependant on a ventilator, Jimmy nonetheless begins pre-school soon!
Kezzi
(UK)
Kezzis motor symptoms were a prelude to complete paralysis and severe pain, relapses, conflicting diagnoses and finally a diagnosis of CIDP/AMSAN.
A Miller-Fisher patient
(USA)
This short article describes the symptoms, diagnosis and treatment of a patient with Miller-Fisher syndrome (MFS).
Tony Flores
CIDP 1994
CA, US
Tony's life changed radically after he was struck down with CIDP. He is now embarking upon treatment with Celcept ..
Konrad Tiburzy
(Germany)
CIDP patient whose condition appears to be worsening despite IVIg treatment.
Tom Hawkins
(UK)Another humourous account from Tom, this time about life after GBS.
Linda Schaedle
(USA)After the flu, Linda developed complete paralysis and later recovered. She succeeded in creating a full and busy life, and a successful career despite GBS and a relapse that left her in a wheelchair.
Ron Clingin
GBS '04
NZ
The matter-of-fact way Ron describes his encounter wtih GBS belies the fact that he was in the throes of a serious illness. Ron describes his ordeal and the following joys and troubles as a GBS survivor - a must-read!
Anonymous
GBS '05
Canada
GBS strikes even those who are very fit, as this story illustrates. Speedy treatment can mean the world! Read the tips this writer shares - his/her name is known to the webmaster.
Jayne
GBS '05
USA
Jayne was among those who desperately needed a heart monitor as her condition progressed. However, she was not offered any form for treatment nor was she given any therapy. She suffers from massive fatigue and weakness today.
David Laing
(Scotland)
GBS/2004
David suffers from residual symptoms following a bout of Guillain-Barré syndrome.
Trish Orcutt
(Florida)
GBS/2003Trish had GBS with motor and sensory symptoms. After recovery she still experiences problems..
Tom Hawkins
(UK)An amusing story on the lighter side of being a GBS patient. Enjoy!!
Bill Cole
(USA)Bill developed motor symptoms that left his doctors at a loss. Thought to be 'mental', he was later thought to have had GBS. Read his account of how he fought to recover, and the residual symptoms he still suffers today.
Angela May
(UK)
Angela is recovering from GBS triggered by a stomach upset. Read her encouraging advice to those newly-diagnosed with GBS!
Robyn
(USA)Robyn suffered through GBS and Bells Palsy, and still has residual symptoms.
Peter von der Fehr (Denmark) Symptoms in his hands, feet and face were originally thought to be GBS but were later diagnosed as Peripheral Neuropathy (PN). Read the on-going journal that he and his girlfriend are sharing here: the nerve-wracking waiting for a diagnosis, the pain, the growing depression and distress....
Geri Pistorius
(USA)Geri suffered from GBS in 1983, and describes how difficult it was to suffer from a rare disease then. She has since recovered, but has to use braces and still suffers from great pain.
Steve Kramer
(USA)Steve, an American physician, had GBS twice. He did not fear dying, but he did fear he might not walk again. He also became depressed. Read Steve's story about overcoming GBS, and his relapse.
Asger Lauridsen
(Denmark)Retired physician. Admitted twice with GBS, treated with physiotherapy and discharged. Continued deterioration made third admittance necessary. After several courses of PE and physiotherapy, has made great progress in recovery phase.
Asgers brother may have died of GBS - see 'GBS in 10-year old boy?' above.
Ray Chidester
(USA)GBS after a flu shot, with motor symptoms primarily in feet. Seven years and one relapse later, his feet have begun making a miraculous recovery...
GBS in a 10-year old boy?
(Denmark)Retired physician Asger Lauridsen suffered from GBS. He describes the death of his younger brother, possibly of GBS, in 1945.
Mattia
(Italy)Mattia is a child who has experienced great hardship due to GBS. This case history is in Italian, and is written by his father, Giuseppe.
© Copyright 2001-2007 S. Marcussen. All rights reserved.
Jsmarcussen.com/gbs takes no responsibility for any errors, omissions or misinterpretations. These pages should be used for information only and you are strongly advised to seek professional help particular to your circumstances. For more information, please visit the website http://www.jsmarcussen.com/gbs or e-mail jsmarcussen@mail.tele.dk
