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Posted on 6. December 2018

Finding “My People”

By Jessica Schexnayder

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For those of us living with chronic illness, finding people who understand can be challenging. In 2012, I was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) and variant multifocal motor neuropathy (MMN). The occurrence of CIDP and Guillain-Barré syndrome (GBS) is one or two per 100,000 people. MMN is even rarer at 0.6 cases per 100,000. Imagine with those statistics trying to find another patient who knows what you are going through. It was a tough and lonely road until I discovered the GBS/CIDP Foundation International (www.gbs-cidp.org), whose mission is "To improve the quality of life for individuals and families affected by GBS, CIDP or related syndromes such as MMN."

This year, I was able to attend the Foundation's 15th Biennual Symposium in San Diego, Calif., held Nov. 1-3, 2018. As a first-time attendee, I was unsure of what to expect, but from the moment I checked in, I knew these were "my people." The atmosphere was warm and welcoming, and it continued through the evening's event: a walk and roll through the resort property. Attendees were given color-coded T-shirts representing 10 geographic regions, both national and international, making it visually easy to find other patients in one's home area. Throughout the crowd, I recognized faces I'd only seen on social media. It was easy for me to make connections and new friendships as a stunning sunset descended over Mission Bay.

Actor and GBS patient Michael Coleman was Friday morning's keynote speaker, and his opening remarks visibly resonated with the crowd: "Meeting all of you, I feel like an alien who has finally found my tribe … a wonderful fraternity with one hell of an initiation process." Smiles, head nods and laughter filled the room as he spoke; we understood.

Friday's and Saturday's sessions were presented by the Foundation's Global Medical Advisory Board doctors and leading field experts, giving patients, caregivers and loved ones valuable insight into these conditions. Not only were we able to learn from these experts, but also from each other through many conversations about shared experiences.

The symposium went out with a bang on Saturday evening, celebrating 30 years of support, education, research and advocacy. A record-breaking 557 people from the United States and 12 international countries were in attendance over the three days. I feel I have gained a wealth of knowledge from the sessions, and have added new and brave people into my circle. I'm already looking forward to the next symposium. Philadelphia, here I come!

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