Saturday, May 7, 2016

What you do not know if you do not have Guillain-Barré Syndrome or one of its variants

In an
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.




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.)

I GUILLAIN-BARRÉ SYNDROME: THE THREE FRENCH WORDS THAT CHANGED MY LIFE
by Bree Hogan

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.

My Experience with Guillain-Barré SyndromeAn 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

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.


This also made my cry.



Tyler's GBS Recovery - Day 119 - 3rd Walk



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


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





9 comments:

  1. 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.

    http://whatyourdonotknowbecauseyouarenotme.blogspot.com/2015/12/what-you-do-not-know-if-you-do-not-have.html

    ReplyDelete
  2. 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

    ReplyDelete
  3. https://www.youtube.com/ and Bobs Story at ramgbs.wordpress.com Bob Martin gbs survivor

    ReplyDelete
    Replies
    1. Thanks, I added your blog but I think I need a better link for the video

      Delete
  4. Thanks 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

    ReplyDelete
    Replies
    1. First, 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.

      Delete
  5. Thank you for adding the link about Crystal Brown :))

    ReplyDelete
  6. Thank you for adding the link about Crystal Brown :))

    ReplyDelete

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