Meeting other GBS Survivors

When I was given the diagnosis of Guillian Barre Syndrome (GBS), no one really knew what the disease. We were told it is considered a rare disorder affecting 1-2 per 100,000 people. With being so critical ill in the weeks following my admission, my mom and friends/coworkers were overwhelmed by the situation. My dear friend Sara is a great researcher, if she doesn’t know something she investigates to find more information to help better a situation. She did this for all of us. In her research she found there was a GBS Support meeting happening in Calgary (2017). My mom, Sara and her sister Amy attended the meeting on my behalf. My mom came back with pamphlets of information explaining more about this disease.  They met survivors, Dean Lower and Kim Lange, both had GBS to begin with but has transitioned to CIDP (Chronic Inflammatory Demyelinating Neuropathy). I met Dean and Kim at the first annual GBS/CIDP Walk and Roll fundraiser in 2018. It was so wonderful to see our survivors and they were walking - it continued to give me hope I too will walk again. Over this past year, I’ve had the opportunity to see them at an education session explaining about GBS and IVIG treatments plus at the second annual Walk & Roll this year. Last week, I signed an agreement to become a GBS liaison for the Calgary region. Hopefully my experiences can help someone else going through the same challenges we face with this disease. 

Another GBS survivor I have met is Holly Gerlach, from Edmonton. I met her initially over the Internet watching her YouTube video of her experiences - being in ICU on life support, unable to move shoulders down, learning how to walk, feed her herself, and just relearning the things we do in our lives. I was formally introduced to her at the first annual Walk and Roll fundraiser in 2018. She has been wonderful this year providing encouragement and advice about dealing with the challenges of GBS. Holly has begun a new weekly YouTube series talking about GBS and her experiences she has found along the way. Definitely an inspiration to others. 


Holly and Dean

Holly, Myself and Kim

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