Relapse anecdotes?

    • August 9, 2021 at 12:49 am

      Hey everyone!

      Not exactly sure what the rules for this forum are but I’m just going to put some stuff out there and see what happens. I was diagnosed with CIDP at 8 years old in 2008, had a few relapses, and eventually went into full remission in around 2015 while completely stopping IVIG. I am definitely one of the lucky ones, although I have a feeling my youth helped me out a little with my recovery.

      So a few questions for you all, has anyone experienced (or know someone who has experienced) something similar (childhood CIDP with full remission for 5+ years)? I am curious of the likelihood of me relapsing at this point. I know there are no studied answers for me (trust me I’ve looked), but I just discovered this community and I am curious. We were unable to link my CIDP with a virus or vaccine, so I am unsure why it happened in this first place. I’m extremely grateful for my health now, but sometimes the uncertainty of it all really gets to me.

      Anyways, I’d be happy just to hear some of your stories. I have quite literally never spoken to another person with CIDP or Guillain Barre before so this is kind of exciting for me;).

    • August 9, 2021 at 2:59 pm

      Some interesting stories from young people are posted toward the end of the following brochure: