It’s GBS Awareness Month!

This month is an important one to me, as I always try to bring awareness to the disease that nearly took my life 6 years ago after the birth of my daughter. Guillain Barre syndrome is a rare disease that affects about 1 out of every 100,000 people. When I was diagnosed with GBS, many of the doctors and nurses I had had never seen a case of GBS before.

So what is GBS? It is an autoimmune disorder, where your immune system attacks your nervous system, quickly paralyzing you (usually from the limbs inward). About 30% of patients will require mechanical ventilation to help them breathe (myself included) and majority of patients will need physiotherapy to teach them how to do day to day tasks again. About 5% die from complications. GBS is an acute illness, meaning that once the acute phase is over, you start to recover, but this can take months to years. Some patients don’t ever fully recover and are left using walkers or wheelchairs. So why is this month important? Because rare diseases like GBS and CIDP just don’t get the same amount of media coverage or fundraising that other diseases, like Cancer, get. It may be rare, but people still need resources and support, and there’s not much out there when a disease is rare. Also, early detection is key and getting treatment started can make all the difference in the world. It’s important to listen to your body and go to a doctor if something doesn’t feel right. I went in with a tingly finger and weak legs and was told I had a pinched nerve…72 hours later I was paralyzed in ICU where I spent three months. I was completely healthy before this, and was just 26 years old.

I’m grateful to have recovered completely but not everyone is that fortunate. In honor of GBS awareness month I ask that you please watch my video and see what GBS does to a person. And SHARE it for further GBS awareness!!! If my story inspires you to live your life to the fullest, or motivates you to donate to the GBS foundation, or helps someone else with GBS not feel so alone, then it makes what I went through all worth it. ❤️

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2 Responses to It’s GBS Awareness Month!

  1. Carla says:

    Hi Holly, I enjoy reading your blog. I also was diagnosed with GBS in 2013, age 27, 16 weeks pregnant and fully ventilated. I’m almost fully recovered and have a very happy and healthy 3 1/2 year old boy and a 15 month old little girl. It’s nice to be able to relate to your posts, especially given our circumstances were very similar!

  2. Emily says:

    Hi Holly – I saw your post on FB and as soon as I started reading, I knew you had had Gullian Barre (even before you said it). I had Gullian Barre Syndrome when I was 6 years old, over 30 years ago (I am almost 41). Despite being such different ages, my story is very similar to yours. I had tingly fingers the day before Thanksgiving. The day after Thanksgiving, I woke up and could not walk. My parents took me to the hospital and, hours later, I was diagnosed with GBS. Within a few days, I was completely paralyzed, at the worst of it, I could not even open or close my eyes. I was quickly put on life support including a tracheotomy. I was in ICU on life support for 6 weeks. On New Years Day, the doctor came it and removed my trach. I had a gaping hole in my neck, but I could not wait for my parents to visit so that I could show them it was gone! After that, I left ICU and was able to start speech therapy, physical therapy, and occupation therapy. I left the hospital just after Valentines Day. I spent some time in a wheelchair, on crutches, learning to crawl again, and finally I was able to walk around June of the same year. For the most part, I have fully recovered. The muscles in my feet were ruined from lack of use and even after a tendon transplant, I still limp when I walk. But, of course, I am just happy that I can walk. Although having GBS was devastating, I look back on that experience and know that it changed my life for the better. I am more compassionate, more understanding and have a greater sense of gratitude for all the little miracles of life….like being able to walk! Thanks for sharing your story! Emily

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