Support Starts with Awareness

"It starts with a tingle and ends with a battle most people have never heard of." That’s how one Guillain-Barré syndrome (GBS) survivor described the condition. Every May, patients, caregivers, healthcare providers, and advocates unite for GBS/CIDP Awareness Month to shine a light on these rare but life-altering autoimmune disorders.

GBS and CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) affect the nerves, often leading to muscle weakness, paralysis, or chronic pain. And yet? Most people can’t even pronounce them—let alone recognize the symptoms. That’s why this month matters. It’s a chance to raise awareness, educate the public, and rally behind those who live with these challenging diagnoses every day.

Whether you're newly diagnosed, supporting a loved one, or simply want to learn how to help, this guide will walk you through what GBS/CIDP Awareness Month is all about—and how you can get involved in 2025.

What Are GBS and CIDP? (Understanding the Basics)

I still remember the day my wife rushed me to the ER thinking that I was having a stroke. That was the start of my journey with CIDP—Chronic Inflammatory Demyelinating Polyneuropathy. It’s a mouthful, I know. Before my diagnosis, I’d never heard of it. Now, I live with it every single day.

GBS vs. CIDP: What’s the Difference?

Before they landed on CIDP, my neurologist first considered Guillain-Barré syndrome, or GBS. The two are kind of like cousins. Both mess with your peripheral nerves, but GBS comes on fast—like a storm. CIDP? It’s slower, sneakier. It crept into my life over months.

• GBS usually hits suddenly and can lead to total paralysis within days or weeks.

• CIDP, on the other hand, is chronic. It can drag on for months or years if not treated.

Looking back, the slow build-up of numbness and weakness was a clue. But I brushed it off. I wish I hadn’t.

Causes and Triggers: How Did I Even Get This?

That’s the million-dollar question. I never got a straight answer. They told me CIDP is autoimmune, meaning my body’s immune system decided to attack my own nerves. Lovely, right?

I didn’t have a big infection before my symptoms started, but a lot of people with GBS or CIDP do. Things like the flu, COVID-19, or even a stomach bug can trigger it. Somehow, your body mistakes nerve fibers for the enemy. It strips away the myelin sheath—the protective coating on nerves—which slows down the signals between your brain and muscles. That’s why simple things suddenly become hard.

Symptoms: The First Signs I Noticed

Following the stroke like symptoms, mine started with tingling in my feet. It felt like they were asleep, all the time. Then came the weakness—first my legs, then my hands. It got hard to walk. Stairs became a mountain.

Common symptoms I had (and many others do too):

• Numbness or tingling in arms and legs

• Weak grip strength

• Muscle fatigue that made daily tasks hard

• Trouble with balance and coordination

• Occasional shooting pain or burning sensations

I never fully lost mobility, but some people do. Especially with GBS, paralysis can hit fast. With CIDP, it’s more like a slow fade. Scary either way.

Getting Diagnosed and Starting Treatment

It took about six months and multiple doctors before I got a solid diagnosis. Tests like nerve conduction studies, spinal tap, and blood work helped confirm it. Honestly, I was relieved to finally have a name for what was happening to me.

What I’ve learned? Early diagnosis and treatment matters. The sooner you start, the better your chances of slowing it down or even sending it into remission.

Living With CIDP: What Comes Next?

I won’t sugarcoat it—CIDP is unpredictable. Some days I feel strong. Other days I’m wiped out after folding laundry. But with the right treatment plan, you can live a full life. I’ve met people in online support groups and through the GBS/CIDP Foundation International who run marathons. Others are still fighting to walk again.

Most people with GBS do recover, though it can take months or years. Some have lingering nerve pain or fatigue. With CIDP, some folks achieve remission. Others (like me) manage it like a long-term condition.

It’s a journey. One with setbacks and small victories. But we keep going. And that’s why awareness matters—so more people know the signs, ask the right questions, and get help sooner than I did.

Why May Is GBS/CIDP Awareness Month (And Why It Matters)

I remember the first time I heard the term “Guillain-Barré syndrome.” Honestly? I thought someone had sneezed mid-sentence. That’s the harsh truth about rare diseases—people just don’t know they exist until they or someone they love is living through it. That’s exactly why May is set aside as GBS/CIDP Awareness Month—to make the invisible visible, and the unknown unforgettable.

The History and Origin of the Awareness Campaign

GBS/CIDP Awareness Month began as a grassroots effort by patients, families, and medical professionals who were tired of battling these debilitating conditions in the shadows. The GBS|CIDP Foundation International, founded in 1980 by Estelle Benson and her husband after her son was diagnosed with GBS, led the charge. What started as support group meetings in church basements grew into a global network, and eventually into a full-blown awareness movement recognized every May.

Over the years, this campaign has spread to more than 30 countries, sparking walks, fundraisers, and even legislative efforts. May isn’t just about ribbons—it’s about action, education, and unity across the rare disease community.

The Importance of Rare Disease Visibility

Let’s be real—if something only affects a small percentage of people, it’s easy for the world to look the other way. But “rare” doesn’t mean insignificant. In fact, 1 in 100,000 people are diagnosed with GBS each year, and CIDP—though rarer—can cause lifelong disability if not treated early.

Awareness saves lives. The more people understand what these conditions are, the more likely symptoms will be recognized early, diagnoses will be made faster, and treatment can begin before permanent damage occurs. It also encourages funding for research and better healthcare training, so that medical professionals don’t mislabel symptoms as something benign.

The Challenges Faced by Patients

Living with GBS or CIDP is no walk in the park. A lot of people get misdiagnosed at first—brushed off with “it’s just anxiety” or “maybe it’s a pinched nerve.” Meanwhile, their bodies are shutting down. Some patients lose the ability to walk. Others can't breathe without a ventilator.

Beyond the physical symptoms, there’s the emotional isolation. Friends fade away, employers don’t understand, and families are left scrambling for answers. There’s also the ongoing financial burden—wheelchairs, IVIG treatments, rehab, missed work—it adds up fast.

And because these are invisible illnesses, many patients are questioned or even doubted. I once heard a woman with CIDP say her boss asked if she was "faking it" because she didn’t look sick. That’s the reality we’re up against.

How Awareness Changes Outcomes

Awareness isn’t just some feel-good campaign—it’s practical, it’s powerful, and it changes lives. When people know what GBS and CIDP are, they talk about them. When doctors are trained to spot the early signs, they diagnose faster. When researchers get funding, new treatments are developed. And when patients are believed, they heal better.

During GBS/CIDP Awareness Month, we amplify all those voices that are too often ignored. We create space for people to share their stories, for caregivers to find resources, and for the medical community to lean in and learn.

So, whether you're lighting your porch in teal, running a fundraiser, or just reposting a stat—you're helping. You're making a difference. And you’re reminding someone out there that they’re not alone in this fight.

How to Raise Awareness in Your Community

When I first learned about GBS and CIDP, I felt helpless. It was like being dropped in the middle of a medical dictionary with no flashlight. But what pulled me out of that fog was connection—and awareness was the bridge. Whether you’re personally affected or just passionate about helping others, raising awareness in your own backyard can make a massive difference.

Hosting or Participating in Virtual/In-Person Events

One of the easiest ways to get involved is by joining local or national GBS/CIDP Awareness Month events. A few years back, I helped organize a neighborhood walk. Nothing huge—just a few families, matching t-shirts, and lots of teal and gold ribbons. But it sparked real conversations. People asked, “What’s GBS?” and just like that, we planted seeds.

Don’t feel like you need to host a big event. You can:

• Join an existing Walk & Roll

• Set up an information booth at a local health fair

• Volunteer with your local foundation chapter

• Invite a speaker (even via Zoom) to talk about rare neurological disorders

• Host a fundraiser night at a local restaurant

Every little event counts. Trust me.

Sharing Stories on Social Media Using Official Hashtags

Social media is your megaphone. During May, platforms like Instagram and Facebook are packed with people sharing survivor stories, symptoms checklists, or even just selfies wearing awareness ribbons.

Use hashtags like #GBSCIDPAwareness, #GuillainBarreAwareness, or #CIDPCommunity to join the global conversation.

When I shared my CIDP story, people from across the globe reached out with their own experiences. That’s the beauty of social media—it shrinks the distance between stories and support.

Wearing Teal and Blue Ribbons

You’d be surprised how many people ask about a ribbon pinned to your jacket.

The teal and blue awareness ribbon symbolizes support for GBS and CIDP. I keep a stash in my car and give them out whenever I get the chance. Some coworkers started wearing them too, and soon our whole office got curious. A little color can lead to big conversations.

Distributing Flyers and Fact Sheets

I used to think handing out flyers was outdated. Spoiler alert: it’s not. In a world overflowing with digital noise, a good old-fashioned fact sheet stands out—especially in waiting rooms, gyms, or libraries. Be the Br

Print out communication cards or create your own flyers with:

• Early GBS symptoms to watch for

• How to get diagnosed

• Stories of hope and recovery

• Where to find GBS/CIDP support groups

Make sure everything links back to trusted sources like gbs-cidp.org or NINDS.

Educating Your Workplace, School, or Community Center

If you’re comfortable speaking, this is gold.

You could:

• Offer to lead a lunch-and-learn at work

• Ask your HR department to highlight GBS/CIDP during May

• Set up an awareness bulletin board in your local YMCA or library

• Partner with local nurses or health educators to give a talk

Bottom line? Awareness doesn’t have to be loud to be effective. Sometimes it’s just starting a conversation that wouldn’t have happened otherwise. You never know who’s listening—or who might be struggling silently with symptoms they don’t yet understand. And your voice? It might just be the one that changes everything.

Ways to Support GBS/CIDP Patients and Caregivers

You know what’s one of the hardest parts about living with GBS or CIDP? It's not always the physical symptoms—though those are brutal—it’s feeling like no one gets what you're going through. If you’re wondering how to genuinely help someone going through this, here are a few meaningful, practical ways.

Emotional and Practical Support Ideas

Let’s start with the basics—showing up. When someone is navigating GBS or CIDP, even the smallest gestures of kindness can feel monumental.

• Listen without judgment. Don’t rush to fix or give advice. Just be present.

• Offer to drive them to appointments—or better yet, wait with them. Hospital hours can feel lonely.

• Help with daily tasks. A hot meal, help with laundry, or watching their kids for an hour can mean the world.

• Send thoughtful texts or care packages. Chronic illness can feel isolating; a reminder that someone’s thinking of them goes a long way.

• Respect their boundaries. Some days, they’ll need company. Others, they’ll need space.

And hey, don’t forget the caregivers. They often carry an invisible weight and rarely get asked, "Hey, how are you doing?"

Fundraising and Donating to Organizations Like the GBS|CIDP Foundation

If you're more of a behind-the-scenes helper (like I am), fundraising can be your superpower. The GBS|CIDP Foundation International does incredible work—providing educational materials, connecting patients to specialists, and funding research.

• Set up a birthday fundraiser on Facebook.

• Host a local bake sale or charity run in May for Awareness Month.

• Donate directly—every dollar makes a difference, especially in rare disease communities.

• Reach out to your workplace about corporate matching donations. It's one of the easiest ways to double your impact.

And remember—awareness is a form of donation, too. Sharing their resources helps others get the help they need faster.

Volunteering Opportunities

Not everyone can give money—but time? That’s just as powerful.

• Volunteer to be a GBS|CIDP Foundation liaison in your area. They help connect patients with local support and resources.

• Offer your skills. Graphic designer? Help with awareness materials. Social media savvy? Run a campaign. Handy with organizing? Set up events.

• Join virtual patient support teams or mentorship programs.

Honestly, you don’t need a medical degree to make a huge difference. You just need a heart and a few hours.

Connecting Through Support Groups and Forums

When I joined a CIDP Facebook group, it was a game-changer. Finally, someone who understood the fear of a relapse or the weird tingling in your toes that makes you wonder, "Is it coming back?"

• Encourage patients or caregivers to join online communities like Reddit’s r/GBS or private Facebook groups.

• If you’re part of a group yourself, share uplifting posts, helpful resources, or just check in.

• Don’t underestimate peer-to-peer validation. "I’ve been there too" is often more comforting than any clinical advice.

If there’s a local in-person meetup, offer a ride or just go with them if they’re nervous. Community = strength.

Advocating for Disability Access and Accommodations

This one gets overlooked a lot—but it’s HUGE. GBS and CIDP can cause temporary or long-term disability and navigating accessibility systems is no joke.

• Speak up when public spaces lack ramps, elevators, or proper signage.

• Support policy changes that make healthcare and disability benefits more accessible.

• If you’re an employer or educator, advocate for flexible schedules or remote options.

• Help someone apply for ADA accommodations at work or school—they can be tricky without guidance.

Even sharing a social media post about accessibility or calling your city council about sidewalk access can make a dent.

At the end of the day, supporting GBS and CIDP patients isn’t about grand gestures—it’s about consistent, compassionate presence. You don’t need to be a superhero. You just need to show up. And trust me, that matters more than you’ll ever know.

Educational Resources and Where to Learn More

When I was first introduced to GBS and CIDP—I had no idea where to start. I remember typing “CIDP” into Google and getting a mix of terrifying medical jargon and half-baked forum posts. It was overwhelming. But over time, I found a handful of legit resources that helped me understand what I was facing, and I’m sharing them here, so you don’t have to dig like I did.

Trusted Websites and Organizations

Let’s start with the big names—organizations that are out there every single day, educating, funding research, and supporting patients.

• GBS|CIDP Foundation International – Honestly, this is the go-to. Their site is packed with brochures, treatment guidelines, real-life stories, and global events. They even have a patient registry and an incredible peer support program. Visit gbs-cidp.org and you’ll see what I mean.

• NINDS (National Institute of Neurological Disorders and Stroke) – This is where you’ll find super detailed, medically reviewed information. It’s not fluffy, but if you want to understand how GBS and CIDP affect the nervous system at a clinical level, this is your place: ninds.nih.gov.

• Rare Diseases Clinical Research Network (RDCRN) – They host clinical trials and updates about new treatments for rare disorders, including GBS and CIDP. Great if you’re into the science-y side of things. "Nerd out" at rarediseasesclinicalresearchnetwork.org

• Neuropathy Commons – Created by doctors at Mass General, it’s a useful directory of info on all kinds of neuropathies, including autoimmune ones like CIDP. neuropathycommons.org

I always recommend people bookmark these. They’re accurate, frequently updated, and not trying to sell you some miracle magnesium oil.

Books, Videos, and Documentaries

If you’re like me, sometimes you just want something more personal or visual. There’s something powerful about seeing someone else’s journey.

• “No Time for Tears: A Survivor’s Story of GBS” by Judy Heath – A raw, honest account of one woman’s road to recovery. It made me tear up more than once.

• “The Flame Within” (short film) – It’s been floating around YouTube and social media—heartbreaking but empowering. It highlights the emotional side of living with a rare autoimmune disease.

• TEDx Talks – Search for “GBS” or “CIDP” and you’ll find a few powerful ones. I remember one where a young athlete shared how GBS paralyzed him in days—but didn’t stop his fight.

• Patient Journey Videos on the GBS|CIDP Foundation YouTube channel – Real people. Real stories. Sometimes that’s what makes it all make sense.

And if you’re a podcast listener, check out health podcasts like “Patients Rising” or “The Rare Life.” Every now and then, they dive into conditions like GBS or CIDP.

Online Communities and Support Networks

This is where it gets real. Forums and Facebook groups might not be “clinical,” but they’re full of gold nuggets of lived experience.

• GBS|CIDP Foundation Facebook Groups – There are several, including ones for newly diagnosed patients, caregivers, and even those recovering after years. I lurk in a few and see people sharing everything from IVIG tips to how to explain CIDP to coworkers.

• Reddit’s r/neurology and r/GBS – These are hit or miss, but every so often, someone shares something brilliant. It’s also good for emotional support if you're feeling isolated.

• Inspire’s GBS/CIDP community – More structured than Facebook, less chaotic than Reddit. People post detailed stories and get thoughtful replies.

• HealthUnlocked – This UK-based platform has an active CIDP group, and even though I’m not in the UK, it still helped me understand global perspectives.

Tip: If you’re jumping into forums, always double-check advice with a doc. Some posts are incredibly helpful others, not so much.

Continuing Education for Healthcare Professionals

If you’re in the medical field—or just a patient wanting to share resources with your doctor—these platforms offer clinical education specific to GBS and CIDP.

• GBS|CIDP Foundation’s CME Program – Yep, they offer accredited Continuing Medical Education courses. Great for neurologists, but also primary care docs who may be the first to see these patients.

• UpToDate and Medscape – These are used by professionals, but patients with a good science background can learn a lot from their summaries on treatment options and differential diagnosis.

• American Academy of Neurology (AAN) – Occasionally releases guidelines and training modules on CIDP and other peripheral neuropathies.

One thing I’ve noticed is that the more doctors know about GBS and CIDP, the quicker people get diagnosed—and that can literally change lives. So, if you’re a provider reading this: thank you. Keep learning. Patients need you.

Bottom line? Don’t rely on random articles and outdated forum threads. If you want solid, supportive, and accurate information, these resources are where you want to be. Whether you're a patient, a caregiver, or just someone who wants to help, knowledge really is power. And thankfully, it’s out there—you just need to know where to look.

How to Take Action During Awareness Month

If you’ve ever thought, “I want to help, but I don’t know where to start,” you’re not alone. When I first learned about GBS and CIDP, I felt helpless—like no amount of empathy could turn into actual impact. But here’s the thing: small actions snowball into serious change. And May is the perfect month to start rolling.

Whether you’ve got five minutes or five hours to give, you can use this awareness month to create real momentum for the GBS/CIDP community. Here’s how.

Create a Daily or Weekly Action Plan

One of the easiest ways to stay consistent and visible during the month is by building a simple awareness schedule. I used to overthink this—like, I needed a giant campaign or nothing at all. Nope. Here’s what worked better:

• Daily social posts: Share a fact about GBS or CIDP with a personal caption. Don’t just post stats—talk about how these disorders affect real people.

• Weekly highlights: Dedicate one day a week to spotlight something powerful: a survivor story, a treatment breakthrough, or a behind-the-scenes look at caregiving.

• Host a small event: Think low-stress. Maybe a Zoom Q&A with a local neurologist, a bake sale where proceeds go to the GBS|CIDP Foundation, or even a teal-and-gold dress day at your kid’s school.

Keep it manageable. Keep it meaningful.

Sign Petitions or Contact Lawmakers

GBS and CIDP are rare diseases, and unfortunately, that means research funding and policy support often lag behind. But policy change starts with awareness—and awareness starts with voices like yours.

• Look for current petitions on change.org or linked through GBS|CIDP Foundation.

• Email or call your local representatives. Seriously, it’s not as intimidating as it sounds. I used a pre-written script and added a short note about why this mattered to me. It took 5 minutes.

• Ask your rep to support legislation that boosts rare disease research, disability access, or chronic illness protections.

Your voice might be one of the few they hear on this issue. That’s powerful.

Collaborate with Local Media for Press Coverage

Local newspapers, radio shows, and even community newsletters are often looking for human-interest stories—especially if there’s a timely hook like an awareness month.

• Pitch a short story about someone in your area living with GBS or CIDP.

• Offer to write an op-ed or letter to the editor about why May matters.

• Reach out to your city council to declare a local GBS/CIDP Awareness Day—some folks have even gotten buildings lit up in teal and gold!

Don’t underestimate the reach of local media—it’s where real community conversations begin.

Partner with Influencers or Bloggers to Expand Reach

If you know someone with a decent online following—think chronic illness bloggers, disability advocates, or even wellness coaches—ask them to help spread the word.

• Share a ready-made post or reel they can use on their platform.

• Offer to do a short interview or guest post on their blog about your experience.

• Collaborate on a giveaway (teal ribbon merch, awareness T-shirts, etc.) to draw attention to the cause.

You’d be surprised how many content creators want to do good—they just need a story or cause to highlight.

Join Global Awareness Campaigns and Light-Up Landmarks

One of my favorite parts of May is seeing landmarks across the world lit up in teal and blue—it’s a visual reminder that no one’s alone in this fight.

• Check the GBS|CIDP Foundation’s website for a list of participating buildings and cities.

• Share photos on social media with the official hashtags: #GBSCIDPAwareness and #LightUpTheWorld

• Host your own mini version: glowsticks at a community walk, teal string lights in your window, or even lighting up your front porch.

It sounds small, but visibility matters—especially for conditions most people haven’t even heard of.

TL;DR? You don’t need to go big to go meaningful. You just need to show up. Every action—posting a fact, signing a petition, wearing teal—adds up. So, choose your pace, find your lane, and let May be the month you turn awareness into action.

Together, we can educate, support, and advocate for a future with better understanding, earlier diagnoses, and stronger care.