Below is going to be an ever growing list of links to blogs and videos that give some insight into what it's like to live through Guillain-Barré syndrome and its variants. If you have something you'd like to add to the list, leave it in the comments.
I'll start with my blog. It started as a blog about running, then a blog about being a stay-at-home dad and running. Now, it's about life with the evil cousin of Guillain-Barré, acute motor axonal neuropathy. What you do not know because you are not me.
This is a link to the official list of patient stories from the GBS/CIDP foundation
Go to the mighty.com and search for GBS. Or just go here
The title of this Runner's World article says it all! From Full Paralysis to Finishing a Marathon in 10 Months. The before and after videos below taken less than 10 months apart show it all.
From Paralysis to Power is a portal to a pretty sophisticated siteGuillain Barré and Beyond "I put this site together so that kids affected with the syndrome, and their parents, could read my story as someone who has been in their shoes and gain hope from my progress."
Suddenly Paralyzed, 2 Men Struggle To Recover From Guillain-Barre This is an National Public Radio spot where two men tell their story. ( have tried and failed to embed the audio, so click on the link and it will take you there.)
Guillain-Barré Syndrome for Dummies
Research, support, and personal stories regarding autoimmune diseases.
THE EIGHTH DAY Made me a little emotional because the young patient's name is also Michael. By M.C. McConnell. And you can read more here
How Guillain Barre Syndrome Can Change Your Life Instantly
My Experience with Guillain-Barré Syndrome. An online scribble of thoughts after experiencing Guillain-Barré Syndrome.
Drew's CIDP Story
Drew's story on CIDP the illness and what happened to him. Relates to GBS & CIDP and treatments for the illness/sufferers. CIDP is Chronic Inflammatory Demyelinating Polyneuropathy, The acute (shorter term) version is GBS - Guillain-Barré syndrome, which apparently is much more common.
Bryan's CIDP Stem Cell Journey
Our Brush (es) with GBS ~ Guillain Barre Syndrome
My life with CIDP
Don't mistake my lack of strength with weakness! I was diagnosed with CIDP in 2005 and it's been a rough road for both me & my family & friends. I hope this blog helps others that have been diagnosed with CIDP or it's annoying little cousin GBS. With a lot of love and support we can learn to live again!
RamG Vallath - Bestselling Author, Motivational Speaker
I am the bestselling author of the humorous, inspirational book, 'From Ouch to Oops' and also a motivational speaker. I hope to touch as many lives as possible in a positive fashion. You can also check out my website, www.ramgvallath.com
War and Peace - My CIDP Journey to HSCT in Moscow, Russia
Chronic Inflammatory Demyelinating Polyneuropathy
My journey with CIDP. Chronic inflammatory demyelinating polyneuropathy. A mouthful, isn't it? CIDP and GBS are two sides of a coin. GBS being Guillain-Barre Syndrome. Comment from others, others with or without either disease or one similar, would be appreciated.
Wendy's STEM CELL TRANSPLANT FOR CIDP
I'm writing this to tell people about my history of CIDP and my Stem Cell Transplant! I also want people to hear how God has worked in my life to get me ready for this challenge and is going to use this for His glory. I am hoping to get this wonderful procedure out there to the public more so it can help more people. The facility where I am having this done is Northwestern Univ Hospital in Chicago IL. Dr Richard Burt has been doing SCT for 23 auto immune diseases for over 20 years.
Being Pollyanna
A look at how I overcame GBS and am living with CIDP
DAVID GRANOVSKY
The Stem Cell Blog
Holly Gerlach Author of "Happily Ever After : My Journey with Guillain-Barre Syndrome and How I Got My Life Back
Holly Gerlach's Journey : From Guillain-Barre Syndrome to Happily Ever After from Holly Gerlach on Vimeo.
Jan-Erik Kull´s blog Om This is a blog about my journey to treat CIDP (chronic inflammatory demyelinating polyneuropathy) with an autologous hematopoietic stem cell transplant (HSCT) at Lund University Hospital.
Rossana's CIDP/ Stem Cell Transplant journey
This will be a blog about my experience with CIDP and Stem Cell Transplant. To keep my family and friends inform of my progress and to help other sufferers of CIDP to know that there is hope for a cure.
SU BLOG WITH CIDP
AL WE LEFT IN THE WORLD WHAT IN THE WORLD WE HAVE CREATED *** *** *
SEEKING EQUILIBRIUM
HOW I DEAL WITH LIFE FROM THE WORLD OF FIBROMYALGIA AND CHRONIC PAIN.
There were four in the bed and the little one said
I'm a 29 year old geek-extraordinaire, blogging about all sorts of stuff including (but not limited to!) reading, writing, birth, and parenting, as well as a crazy condition known as CIDP, after being diagnosed with it last year.
And Rebecca's new blog R L HOLLAND MAKING IT UP AS I GO ALONG…LITERALLY
My Life is a Soap Opera
CIDP after 10 years, Nice to have a Diagnosis and Treatment
My SCT Journey for CIDP
This is my ongoing blog to document the haematopoietic stem cell transplant for the treatment of my illness, Chronic Inflammatory Demyellineating Polyneuropathy (CIDP). I was looked after by Dr Richard K Burt at Northwestern Memorial Hospital under an FDA approved clinical trial in June 2013.
Luke Wood's Blog
A Fierce Fight against CIDP - Stephanie Stamatelos
Joe Beernink
Just over three years ago, I wrote a blog entry chronicling my first three days with Guillain Barré Syndrome. In it, I wrote that recovery times vary from 3 weeks to 3 years. I obviously didn’t heal in three weeks. My process took much longer. At the three year mark, however, I can say that my recovery is pretty much done.
Guillain-Barré Syndrome A family story about a hellish condition
GBS...One Man's Journey
A description of my recovery from a life altering illness
GBS I would like to take an opportunity to introduce the most dynamic and brave little person I have ever met – my daughter, Pressley.
I Am a Guillain Barre Syndrome Survivor
Personal Stories, Advice, and Support 257 People
Demyelinated not Destroyed
Giving help and hope to those living with demyelinating diseases and their loved ones
I Got Diagnosed With a Rare Disease Today Cidp
A group for newly diagnosed people with any disease to share how you are dealing. 48 People
Hi! I'm Emmelle and I've decided to make a blog about my journey with the autoimmune condition CIDP. It stands for 'Chronic Inflammatory Demyelinating Polyneuropathy' and is one of those rare autoimmune conditions that affect the nerves in the arms and legs.
Guillain-Barre Syndrome Survivor
Life as a newly disabled single Mum
Give Me Strength When I'm Standing and Faith When I Fall
A year ago I finally hit my plateau with Guillain Barré Syndrome and started reclaiming my life. Most people don't loose their ability to do EVERYTHING and eventually get it back. For that I'm so grateful.
Dani's Guillain-Barré Syndrome Story My Guillain-Barré Syndrome Story – Danielle Boyd
No variant; full GBS of ascending paralysis, loss of motor and sensory, and lots of pain.
The Spoon Theory written by Christine Miserandino
Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.
What the hell is Guillain-Barré Syndrome?
ADAMPOWNALLBLOG
WEEK ONE REFLECTIONS – GBS PROJECT
The Business of Bodies
Hi, my name is Paul, I’m 26 and I have CIDP (Chronic Inflammatory Demylinating Polyneuropathy). This blog will try to document my symptoms, progression and treatment from start to finish, along with my frequent encounters with the NHS in both West Yorkshire and south Wales. This blog is an attempt to keep you and more importantly me entertained on this ongoing, ruddy bumpy, uncomfortable and often frustrating journey.
I Survived GBS and OMG
A view of my fight against Guillain Barre Syndrome and how a collection of friends and family helped me through it.
Bob Martin compensation NOT condemnation
Watch this first. Then, if the video producer's name is a hyperlink they have a whole channel.
I was never ever affected by dance before.
It's a little long but I urge you to watch the whole thing. Courtney has a whole channel below is a random episode. Here is a link to her homepage. Click here to see her on the news
This also made my cry.
Tyler's GBS Recovery - Day 119 - 3rd Walk
Read this,then watch
Grover's Journey
Angie Boynton Lyme Guillain Barre Journey
Mark's Journey- Guillain-Barré syndrome (GBS) 6 years
My recovery story: GBS/CIDP by Dorian Fortier
Martin's GBS Journey so far
Guillain Barre' Syndrome by Sheyenne King
“I Started To Feel Like I Was Dead” - Timothee Fighting Guillain-Barré Syndrome
I can't embed Andrew's Story: Guillain-Barré Syndrome but you can click this
Guillain Barre Syndrome: Jane's Recovery 2013
Holly Gerlach's Journey : From Guillain-Barre syndrome to Happily Ever After
Scott Clubine - Journey through Guillain Barre Syndrome
Síndrome de guillain -barre Viviane Chaves
Kit's Journey (through Guillain-Barre Syndrome)
Emily's Journey
My CIDP Physical Therapy Then And Now RAW Footage! No Egg Craig.
Jordan's Miracle Video of his CIDP Journey!
Road to Recovery Guillain–Barré syndrome (GBS)Chonpak Sirikarnwongmas
Wendy's Journey: Guillain-Barre Syndrome Wendy Perez
Guillain Barre Syndrome rarest survivor Barbra Hernandez
Katie's Story a battle with Guillain Barre Syndrome
Fight with GBS Kelsi Amen
Stevan Solares Journey With Encephalitis/Menengitis / Guillian-Barr
kayla My battle with guillain-barre syndrome
Michael's Victory
Síndrome de Guillain-Barré - Maria Eduarda
Caso Roberta (Síndrome Guillain Barré)
MJ's Climb: Journey with Guillain-Barre Syndrome
Paralyzed | Guillain-Barre syndrome
Brian Eaton-Guillain Barre Syndrome
Guillain Barre Syndrome - My Story Part 1 Jon Mailer
Guillain barre syndrome ; GBS syndrome Devesh Shah
Guillain Barre Syndrome: Taylor Crawford
Guillain-Barré Syndrome - Miranda's Journey
GBS-Bericht Jörg Bierach (Teil1)
Guillain Barre syndrome - Brenda Castellanos
Recovering from Guillain-Barre Syndrome Margot te Riele
Kyle Murphy recovered from GBS (Guillain-Barré syndrome) paralyzed for 10 months & learned to walk
CIDP Drewes proces and treatment by nickowent
Intro Vlog CIDP GBS Recovery Process Stephanie Lloyd
CIDP: Tackling a Small Mount Amarie Tackling CIDP
My recovery story Dawn Archer
Explaining a little bit about my CIDP and IVIG infusion therapy to my 4 1/2 year old daughter. eddy rolon
VLOG #1 CIDP Autumn Keener
Guillain Barre Syndrome Experience Jahmila
Getting Home to Hadley
Felix and Guillain-Barré
GBS - My Guillain-Barre story in 7 minutes Simon Arenas
My GBS Picture Story danikamc171
My Guillain Barre Diagnosis founder3
Guillain Barre Syndrome in Pictures eqshannon
Alana's Story
GBS Video Compliation IceMan's World
Road to Recovery ;Guillain Barre 10 Months eqshannon
Guillain--Barré syndrome Recovery Craig Taylor
Síndrome de locked-in Wanderlan Amorim
Ken’s story - locked in
The Bug's World
Ken's story - locked in from neil archibald on Vimeo.
GBS Three Years-Invincible
Bob Shannon's GBS Story in Pictures
Guillan Barre Syndrome in pictures. from eqshannon on Vimeo.
Pregnant with Guillain-Barre-Syndrome - Bridget Hamilton
Hailey's Healing
A Blog about Hailey a 4 year old little girl who is battling Guillain Barre syndrome. Hospitalized for almost a month during which she was placed on a breathing machine, she is now in extensive rehabilitation to regain her strength after the syndrome temporarily completely paralyzed her.
The Gimpy Girl Who Could
Follow my journey spreading awareness about Guillain Barré Syndrome.
The Struggle Is Definitely Real
A blog about living with a disability. Lots of randomness, but mostly just me ranting or raving about one thing or another.
A Blog about Hailey a 4 year old little girl who is battling Guillain Barre syndrome. Hospitalized for almost a month during which she was placed on a breathing machine, she is now in extensive rehabilitation to regain her strength after the syndrome temporarily completely paralyzed her.
The Gimpy Girl Who Could
Follow my journey spreading awareness about Guillain Barré Syndrome.
The Struggle Is Definitely Real
A blog about living with a disability. Lots of randomness, but mostly just me ranting or raving about one thing or another.
The Spoon Theory written by Christine Miserandino
Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.
What the hell is Guillain-Barré Syndrome?
ADAMPOWNALLBLOG
WEEK ONE REFLECTIONS – GBS PROJECT
The Business of Bodies
Hi, my name is Paul, I’m 26 and I have CIDP (Chronic Inflammatory Demylinating Polyneuropathy). This blog will try to document my symptoms, progression and treatment from start to finish, along with my frequent encounters with the NHS in both West Yorkshire and south Wales. This blog is an attempt to keep you and more importantly me entertained on this ongoing, ruddy bumpy, uncomfortable and often frustrating journey.
I Survived GBS and OMG
A view of my fight against Guillain Barre Syndrome and how a collection of friends and family helped me through it.
Bob Martin compensation NOT condemnation
Watch this first. Then, if the video producer's name is a hyperlink they have a whole channel.
I was never ever affected by dance before.
It's a little long but I urge you to watch the whole thing. Courtney has a whole channel below is a random episode. Here is a link to her homepage. Click here to see her on the news
This also made my cry.
Tyler's GBS Recovery - Day 119 - 3rd Walk
Read this,then watch
Grover's Journey
Angie Boynton Lyme Guillain Barre Journey
Mark's Journey- Guillain-Barré syndrome (GBS) 6 years
My recovery story: GBS/CIDP by Dorian Fortier
Martin's GBS Journey so far
Guillain Barre' Syndrome by Sheyenne King
“I Started To Feel Like I Was Dead” - Timothee Fighting Guillain-Barré Syndrome
I can't embed Andrew's Story: Guillain-Barré Syndrome but you can click this
Guillain Barre Syndrome: Jane's Recovery 2013
Holly Gerlach's Journey : From Guillain-Barre syndrome to Happily Ever After
Scott Clubine - Journey through Guillain Barre Syndrome
Síndrome de guillain -barre Viviane Chaves
Kit's Journey (through Guillain-Barre Syndrome)
Emily's Journey
My CIDP Physical Therapy Then And Now RAW Footage! No Egg Craig.
Jordan's Miracle Video of his CIDP Journey!
Road to Recovery Guillain–Barré syndrome (GBS)Chonpak Sirikarnwongmas
Wendy's Journey: Guillain-Barre Syndrome Wendy Perez
Guillain Barre Syndrome rarest survivor Barbra Hernandez
Katie's Story a battle with Guillain Barre Syndrome
Fight with GBS Kelsi Amen
Stevan Solares Journey With Encephalitis/Menengitis / Guillian-Barr
kayla My battle with guillain-barre syndrome
Michael's Victory
Síndrome de Guillain-Barré - Maria Eduarda
Caso Roberta (Síndrome Guillain Barré)
MJ's Climb: Journey with Guillain-Barre Syndrome
Paralyzed | Guillain-Barre syndrome
Brian Eaton-Guillain Barre Syndrome
Guillain Barre Syndrome - My Story Part 1 Jon Mailer
Guillain barre syndrome ; GBS syndrome Devesh Shah
Guillain Barre Syndrome: Taylor Crawford
Guillain-Barré Syndrome - Miranda's Journey
GBS-Bericht Jörg Bierach (Teil1)
Guillain Barre syndrome - Brenda Castellanos
Recovering from Guillain-Barre Syndrome Margot te Riele
Kyle Murphy recovered from GBS (Guillain-Barré syndrome) paralyzed for 10 months & learned to walk
CIDP Drewes proces and treatment by nickowent
Intro Vlog CIDP GBS Recovery Process Stephanie Lloyd
CIDP: Tackling a Small Mount Amarie Tackling CIDP
My recovery story Dawn Archer
Explaining a little bit about my CIDP and IVIG infusion therapy to my 4 1/2 year old daughter. eddy rolon
VLOG #1 CIDP Autumn Keener
Guillain Barre Syndrome Experience Jahmila
Getting Home to Hadley
Felix and Guillain-Barré
GBS - My Guillain-Barre story in 7 minutes Simon Arenas
My GBS Picture Story danikamc171
My Guillain Barre Diagnosis founder3
Guillain Barre Syndrome in Pictures eqshannon
Alana's Story
GBS Video Compliation IceMan's World
Road to Recovery ;Guillain Barre 10 Months eqshannon
Guillain--Barré syndrome Recovery Craig Taylor
Síndrome de locked-in Wanderlan Amorim
Ken’s story - locked in
The Bug's World
Ken's story - locked in from neil archibald on Vimeo.
GBS Three Years-Invincible
Guillan Barre Syndrome in pictures. from eqshannon on Vimeo.
Pregnant with Guillain-Barre-Syndrome - Bridget Hamilton from Bridget Hamilton on Vimeo.
Making Guillain-Barré Liveable Instead of Survivable: The Progression through Eight Wards
Making Guillain-Barré Liveable Instead of Survivable: The Progression through Eight Wards from Island Health on Vimeo.
Patient Story Timothee
Patient Story Timothee from Hocoma on Vimeo.
Kit’s Journey
Kit's Journey from Kit Ooraikul on Vimeo.
Journey to Inspire - Navin Singh Ironman Story
Journey to Inspire - Navin Singh Ironman Story (short version) from A2 VISUALS on Vimeo.
Miracle Matt | Guillain-Barré Syndrome
Miracle Matt | Guillain-Barré Syndrome from THREE FOUR FILMS on Vimeo.
Getting Better Slowly - National Theatre Tour
Getting Better Slowly - National Theatre Tour from Swainson Productions on Vimeo.
Mark of a Devoted Child
Mark of a Devoted Child from NYCity News Service on Vimeo.
Kathy K
Kathy K from North Shore Chiropractic on Vimeo.
“BEGO” Short Film - trailer [I will try to post the film]
"BEGO" Short Film - trailer from DelPaso Films on Vimeo.
Moving Forward After Guillain-Barre’ Syndrome (GBS)
Moving Forward After Guillain-Barre’ Syndrome (GBS) from Madonna Rehabilitation Hospitals on Vimeo.
The video above is based on this
Shamila has a youtube channel
GBS Chronicles
Posts
Greetings. I included your blog and or video in my website. It's a list of first-person accounts of people who are battling GPS and its variants.
ReplyDeletehttp://whatyourdonotknowbecauseyouarenotme.blogspot.com/2015/12/what-you-do-not-know-if-you-do-not-have.html
Thanks for inclued my blog my great wish is nobady founds my blog through the word CIDP but we can share and help someone. Were in portugal we dont have many cases so when i got sick i dont find any informations in portuguese so born my blog. All the best for all the people with SGB - CIDP . THANKS for sharing Mickael
ReplyDeletehttps://www.youtube.com/ and Bobs Story at ramgbs.wordpress.com Bob Martin gbs survivor
ReplyDeleteThanks, I added your blog but I think I need a better link for the video
DeleteThanks for sharing everyone.
ReplyDeleteThanks for adding this link to the bottom of my story. I hope you don't mind if I share it with some others who have approached me after having GBS. Let me know if you'd like company in your marathon. Happy to cheer you on or run with you. Here is a video of my first steps. https://www.youtube.com/watch?v=klidFNW3evA and another at mile 26 of my marathon 10 months later https://www.youtube.com/watch?v=nX4SsKlTiUE
ReplyDeleteFirst, holy moly! I have finished 29 marathons and never look that good at mile 26. And definitely share my blog. And I'm working with Achilles international to get support during the New York City Marathon I'll get in touch with you directly as to how you can be part of that if you want. Also, I am the chapter leader for the GBS – CIDP foundation here in Brooklyn I'm sure this chapters out on the left coast, if you reach out to them they will probably make a monument for you because you can inspire a lot of people.
DeleteThank you for adding the link about Crystal Brown :))
ReplyDeleteThank you for adding the link about Crystal Brown :))
ReplyDelete