GBS / CIDP and related support groups. Salvation in Facebook.

On becoming ill it was very apparent that there wasn’t a great deal out there in terms of support groups for Guillian-Barre and CIDP sufferers. It was useful to actually Google the illness  (now that I knew what I was looking for), but the amount of coverage the illness receive was quite scanty (nervous term there).

There is a UK GBS/CIDP website, but looking at the forums the activity and foot fall is very limited. My initial thoughts were ones of frustration and disappointment. Who was I going to talk to about my symptoms? Was I “textbook” case, was I something more “special”? Fortunately with the expansion of social media salvation came in the for of Facebook (Something I never thought I would say). The same support group Facebook page was a hive of activity, and people were actually talking about… everything. Symptoms, opinions, treatments, options, views and many things in between. I quickly posted about condition and had a plethora of replies. They ranged from support and questions to general advice from people who are also walking down this uncomfortable path.

It was then that I decided to write a blog about my experiences, progression and treatment, to try and document what I was going through and the ups and down I have faced in the hope that someone in my position will read it and think “This is exactly what I’m going through too”, instead of going through the rollercoaster of internet self diagnosis’s which I endured.  One thing is for certain, the Facebook support group was a great help and helped ease a lot of questions I had whirring around in my head, and I will continue to be and active member of the group for many years to come.