Voices of Resilience

There’s something incredibly powerful about hearing someone say, “I understand,” and actually knowing they mean it.

On May 1, at the start of GBS/CIDP Awareness Month, the Los Angeles chapter of the GBS/CIDP Foundation International brought together patients, caregivers, and advocates for an emotional and deeply inspiring virtual panel discussion centered around life with Chronic Inflammatory Demyelinating Polyneuropathy, Guillain-Barré Syndrome, and Multifocal Motor Neuropathy.

Hosted by LA Walk Chair and volunteer Cindy, the event was recorded so others in the rare disease community could continue learning from these stories long after the meeting ended. From the very beginning, the purpose was clear: raise awareness, create connection, and remind people navigating these rare neurological conditions that they are not alone.

Helping facilitate the discussion was Damian, whose calm guidance and educational overview helped connect the experiences shared by each speaker. While the medical details of GBS, CIDP, and MMN may differ, Damian emphasized an important truth echoed throughout the evening: the common thread among every patient is resilience.

And honestly, that resilience looked different for every single person on the panel.

Some stories began with sudden paralysis and emergency hospital visits. Others unfolded slowly over years of misdiagnosis, uncertainty, and frustration. One panelist described losing the ability to hold her child. Another talked about waking up unable to move after what seemed like routine food poisoning. One speaker endured unnecessary surgery before receiving the correct diagnosis, while another spent years isolated before finally finding community through the foundation.

The panel itself reflected the diversity of the rare disease community. Patients ranged from teenagers diagnosed in the middle of college to adults navigating careers, parenthood, advocacy, and lifelong recovery. Some are now in remission. Others continue balancing treatments, mobility challenges, fatigue, and daily symptom management. But every story carried the same underlying message: hope is still possible, even when life changes unexpectedly.

Throughout the evening, there were moments of heartbreak, humor, honesty, and triumph. There were discussions about IVIG, rehabilitation, mobility, mental health, self-advocacy, nutrition, yoga, aqua therapy, and learning how to adapt to a body that no longer behaves the way it once did. More importantly, there was a sense of understanding that only exists when people with shared lived experiences come together.

That’s what made this panel so meaningful.

Awareness Month is not just about medical definitions or statistics. It’s about real people sharing real stories. It’s about helping newly diagnosed patients feel less afraid. It’s about caregivers feeling seen. It’s about creating space for conversations that too often happen in silence.

And on May 1, 2026, the LA chapter created exactly that kind of space.

Why Awareness and Community Matter in Rare Neurological Disease

One of the strongest themes throughout the panel discussion was something that rarely shows up in medical textbooks: isolation.

Not the kind where you simply spend more time at home. The deeper kind. The kind where you feel like your entire world has shifted, but nobody around you fully understands what is happening to your body, your mind, or your future.

For many of the panelists, that emotional isolation lasted years.

Rare neurological diseases often leave patients trapped between uncertainty and invisibility. Many people look “fine” on the outside while privately battling paralysis, fatigue, nerve pain, weakness, mobility loss, or fear that their condition may worsen without warning. That disconnect can make people withdraw from others, even from people they love.

Charisma, who was diagnosed with Guillain-Barré Syndrome at just 19 years old, described how difficult it was returning home after months in hospitals and rehabilitation centers. Before becoming sick, she was a college student posting selfies and living a typical young adult life. Then almost overnight, she found herself partially paralyzed, placed into a medically induced coma, and forced to confront a completely different reality.

During recovery, she eventually deleted social media because watching peers continue with everyday college life became emotionally overwhelming.

That part hit hard because so many people living with chronic illness quietly experience the exact same thing.

Life keeps moving around you while you’re trying to figure out how to exist in a body that suddenly feels unfamiliar.

But what transformed the tone of the panel was hearing how the community slowly began rebuilding hope for many of the speakers.

Because when you live with a rare disease, ignorance can become terrifying. Not knowing what symptoms are normal. Not knowing whether progression is temporary or permanent. Not knowing if anyone else has experienced the same strange sensations, weakness, or setbacks.

And really, that was the heartbeat of the entire panel discussion.

The medical information mattered. The treatment discussions mattered. But underneath all of it was something even more human: the relief of finally finding people who understand.

That’s why Awareness Month matters so much.

Awareness is not only about educating the public. It’s about helping patients and caregivers realize they are not isolated in this experience. It’s about creating communities where fear can be spoken out loud, where resilience can be shared honestly, and where newly diagnosed individuals can hear stories of survival instead of only worst-case scenarios.

For many people attending the panel, this wasn’t just an educational event.

It was proof that they were no longer alone.

CIDP Stories — Learning to Advocate for Yourself

One thing became crystal clear during the May 1 awareness panel hosted by the GBS/CIDP Foundation International LA chapter: people living with CIDP often become experts in their own condition long before the medical system catches up.

That truth showed up again and again in the stories we each shared. Our experiences looked completely different on the surface, but underneath it all was the same hard lesson many rare disease patients eventually learn, if you stop advocating for yourself, it’s easy to get lost in the system.

And honestly, hearing that out loud mattered.

I was first rushed to the hospital because I believed I was having a stroke. At first, the paralysis affected only one side of my body, which made sense clinically. But then it moved from the left side to the right side within days, and suddenly the picture no longer fit.

That moment changed everything.

Over the next six months, I went through what felt like every test imaginable. I was evaluated for ALS. Then MS. Then a long list of neurological possibilities that kept leading nowhere. Eventually, toward the end of October, a neurologist diagnosed me with CIDP after briefly researching the condition online, even reading directly from Google during the appointment itself.

That detail landed heavily with a lot of people listening.

For many patients with rare neurological disorders, diagnosis does not arrive neatly packaged with answers, support, and direction. Sometimes it arrives through confusion, uncertainty, and a physician who has only encountered the disease once during training. I turned to Google, Facebook groups, and eventually the foundation community to educate myself because there simply were not enough resources being offered at the time.

I think that part resonated deeply with everyone because so many people living with rare autoimmune neuropathies end up becoming researchers, advocates, and care coordinators for their own condition whether they planned to or not.

I eventually transformed that experience into purpose. I became the liaison for Southwest Virginia through the foundation and now focus heavily on functional nutrition, mobility support, and helping others better understand symptom management and flare prevention through The Advocate Voice.

Jenny’s story highlighted another painful reality of CIDP: even highly educated medical professionals can struggle to get diagnosed.

Jenny is an eye surgeon, entrepreneur, and mother. Her symptoms began in 2020 after the birth of her daughter, during the height of COVID. What started as weakness in her hands and arms slowly became devastating loss of function. She could not hold her child. She could not feed herself normally. She could not operate as a surgeon.

And yet, she kept being dismissed.

Doctors repeatedly told her the symptoms were likely related to pregnancy and would improve with time. Two years passed before she finally received a diagnosis of a CIDP variant after seeing 22 specialists and undergoing seven nerve conduction studies.

Twenty-two specialists.

That number alone says a lot about the gaps that still exist in rare disease recognition.

One of the most powerful moments from Jenny’s story was when she explained that patients must define their own treatment goals instead of settling for “good enough.” She refused to accept partial recovery as the finish line because she wanted her life back in a meaningful way. Over four years, she tried every major class of CIDP treatment available until she found an approach that worked for her specific variant.

Her message was direct but encouraging, find providers who listen, ask questions, and never be afraid to pursue second or third opinions if your concerns are being minimized.

That kind of persistence can be exhausting. But sometimes it changes everything.

Kristen brought another perspective entirely. Diagnosed at just 14 years old, Kristen faced CIDP and GBS at a time when online support communities barely existed. There were no large Facebook groups. No awareness campaigns filling social media feeds. Very little accessible information at all.

After developing weakness following a stomach virus, Kristen rapidly declined to the point where she could not lift her arms or even get dressed independently. Fortunately, one pediatric neurologist recognized the signs of GBS quickly, and she responded almost immediately to IVIG treatment. But after multiple relapses over several years, her diagnosis was eventually changed to CIDP.

Listening to Kristen talk about those early years really underscored how much awareness efforts matter today.

Patients now have more educational resources, advocacy organizations, and online support than ever before, but there is still a long way to go. Kristen emphasized how important resilience, movement with the help of Sterling Yoga, and support systems became throughout her recovery. Now in remission for more than 15 years, she serves as the Pittsburgh Walk & Roll chair and continues advocating through the foundation while staying active with yoga and hiking.

Her story carried something many people needed to hear, improvement is possible, even after frightening setbacks.

By the end of this section of the panel, a common theme had emerged. CIDP may affect every patient differently, but self-advocacy remains one of the most important survival tools people can develop.

Sometimes that means pushing for more testing.

Sometimes it means changing neurologists.

Sometimes it means refusing to accept “this is as good as it gets.”

And sometimes, honestly, it just means continuing to hope through the uncertainty until answers finally arrive.

GBS Stories — When Life Changes Overnight

If CIDP often shows up as a long, confusing puzzle, the GBS stories showed something very different, a sudden, life-altering storm that can change everything in a matter of days.

There was a noticeable shift in the room during this part of the panel. You could feel it. These were stories where people went from fully functioning, everyday life to complete medical crisis almost overnight. No long lead-up. No slow progression. Just a sharp before-and-after line that no one ever expects to cross.

Dave’s story captured that reality in a very raw and honest way.

In 2005, Dave developed a severe case of Campylobacter food poisoning after what seemed like a routine illness. At first, it felt like a typical recovery period and something you’d expect to shake off after a few bad days. But instead, his body began to fail him rapidly.

He woke up one morning and realized his feet weren’t working properly. Within hours and days, that weakness spread. He described falling, collapsing, and eventually losing nearly all motor function. What started as an ordinary illness quickly escalated into Guillain-Barré Syndrome, leading to complete paralysis.

Over time, Dave became a paraplegic for nearly ten months.

Ten months is a long time when your body no longer responds the way it used to. And yet, even in that period of complete dependence, there were turning points that began to shift his recovery.

One of the most important was aqua therapy.

Dave spoke about how being in water changed everything. The buoyancy allowed him to move in ways that simply weren’t possible on land. Muscles that felt locked or unresponsive could suddenly participate again. It wasn’t an instant fix, but it became one of the most important tools in his rehabilitation journey. Over time, combined with other therapies, he gradually regained strength and independence.

Even now, he continues to live with residual effects, including foot drop and the need for ankle-foot orthotics, but his perspective on movement, therapy, and persistence remains deeply grounded in that experience.

Then came Charisma’s story, which brought an entirely different kind of emotional weight.

At just 19 years old, Charisma returned home from a trip to Hawaii expecting to settle back into normal life, college classes, social plans, and the everyday rhythm of being a young adult. Instead, she woke up with facial paralysis on one side of her face.

At first, it was easy to dismiss. Maybe something temporary. Maybe stress. Maybe nothing serious. But within hours, her symptoms escalated. Nausea set in. Weakness spread. She could no longer lift her arm properly. Then her neck became weak. Then both sides of her body began to fail.

By the time she reached the emergency room, her condition had progressed to the point where she needed support just to hold her head up.

Shortly after, she was diagnosed with Guillain-Barré Syndrome and placed into a medically induced coma to stabilize her breathing and begin life-saving interventions, including plasma exchange and tube support.

For her, life didn’t just pause, it disappeared into a hospital environment filled with machines, monitors, and time that felt impossible to measure.

She spent months in the hospital and rehabilitation centers, including Rancho Los Amigos, navigating not only physical recovery but also emotional processing. One of the most striking parts of her story was how she described the psychological disconnect, believing at first that she would return to college within a few months, only to slowly realize that recovery would take far longer and require far more emotional endurance than she ever expected.

During recovery, she eventually deleted social media because watching peers continue with everyday college life became emotionally overwhelming.

That part hit hard because so many people living with chronic illness quietly experience the exact same thing.

Life keeps moving around you while you’re trying to figure out how to exist in a body that suddenly feels unfamiliar.

And yet, even through that intensity, there were moments of connection and humor. She joked with staff, found small ways to cope, and eventually began rebuilding not just her physical strength but her identity after illness.

For Charisma, attending foundation chapter meetings and symposiums became a turning point. Being surrounded by others who truly understood disability, recovery, accessibility struggles, and chronic illness allowed her to feel seen in a way that traditional support systems sometimes cannot provide. She later graduated college and even delivered a TED Talk, something that once felt completely out of reach while she was lying in a hospital bed wondering if she would regain basic function again.

Together, Dave and Charisma’s stories highlighted the core truth of GBS in a way that statistics never can.

It can happen suddenly. It can escalate quickly. And it can take someone from full independence to total dependence in a matter of hours.

But just as powerfully, it can also show how recovery, while slow, uneven, and unpredictable is still possible with the right care, therapy, and support system.

In the context of Awareness Month, these stories didn’t just raise awareness of a condition. They raised awareness of what it means to have your entire life rewritten overnight and still find a way forward through it.

MMN Stories — The Slow, Uncertain Journey

If GBS often arrives like a lightning strike, the MMN stories revealed something almost harder to describe, a slow, creeping uncertainty that can quietly reshape a life over time without a single dramatic moment of collapse.

This part of the panel carried a different kind of emotional weight. Not the shock of sudden paralysis, but the exhaustion of not knowing what is happening to your body while it keeps changing underneath you.

Brenda was the first to speak, and her story immediately grounded the audience in that uncertainty.

Her symptoms began subtly in 2012: tripping, leg weakness, small changes that were easy to explain away at first. Busy life, family responsibilities, stress. Nothing that clearly pointed to something neurological. But over time, the changes became impossible to ignore. She described her legs feeling heavy, almost like “walking in the ocean,” where every step required more effort than it should.

Still, the answers didn’t come quickly.

When she finally underwent evaluation at Johns Hopkins, the possibility of ALS entered the conversation. That moment alone changed everything emotionally. She described the long drive home afterward, not just as a car ride, but as a mental spiral of fear, uncertainty, and questions about her future, her children, and what life might look like next.

For a while, that diagnosis hung over everything.

And even though ALS was eventually ruled out and she was diagnosed with MMN, the emotional impact of that early uncertainty didn’t just disappear. It stayed. The fear of losing control, the feeling of your body not responding the way it used to, and the constant need to adjust expectations all became part of her lived experience.

Brenda spoke very openly about that loss of control, not just physical, but emotional. At one point, she described reaching a breaking point where frustration, fear, and exhaustion all collided. Simple things like walking, choosing shoes, or maintaining a sense of personal identity suddenly felt overwhelming. There was a moment of isolation where she even told her husband he could leave, because she didn’t want him to be burdened by her condition.

That honesty landed heavily in the room.

But what changed everything for her was therapy and reframing control. She realized she couldn’t control MMN itself, but she could control how she responded to it. That shift, from helplessness to strength, became a turning point in her journey. She stopped seeing herself as MMN and started reclaiming her identity as Brenda, a mother, a person, and an advocate.

That transformation didn’t happen overnight. It came through grief, processing, and a lot of internal work. But eventually, it led her toward something unexpected: advocacy.

Through the GBS/CIDP Foundation International, Brenda began speaking publicly, supporting newly diagnosed patients, and helping build awareness around MMN, a condition many people have never even heard of until diagnosis forces them to learn it.

And then Ed shared his story, which added another layer to the MMN experience, the danger of misdiagnosis and the importance of accurate information early in the journey.

Ed was diagnosed at 19, and like many young patients, his symptoms were initially dismissed or misinterpreted. A fall led to what was believed to be a tendon injury. That assumption set off a chain of events that included imaging, surgery, and continued confusion as symptoms progressed despite intervention.

He even underwent hand surgery based on the belief that a structural issue was responsible. But after waking up and hearing that nothing significant had been found, the uncertainty deepened. Symptoms continued to spread, affecting multiple areas and raising concern that something neurological was at play.

Eventually, after further testing, he received a diagnosis of MMN but only after first being told to consider more severe possibilities like ALS.

What stood out in Ed’s story wasn’t just the diagnostic confusion, but what came after.

Despite the limitations MMN placed on his hands and motor function, he refused to let it define what his life could still include. He continued to play the drums, adapted his technique, and found new ways to stay active. He took up boxing. He ran marathons. He stayed physically engaged in ways that defied the expectations often associated with motor neuropathy.

And perhaps most importantly, he began to focus on what he called “removing ignorance”, through Health Haven he’s connecting with other patients, shortening the learning curve, and helping people understand their condition faster so they don’t lose years to uncertainty the way he initially did.

Together, Brenda and Ed’s stories reframed MMN not as a single narrative, but as a spectrum of experience, one defined by slow progression, diagnostic complexity, emotional resilience, and adaptation over time.

In the context of Awareness Month, their voices helped bring visibility to a condition that often sits in the shadows of better-known neurological disorders, reminding everyone listening that rare doesn’t mean insignificant, it just means underrecognized, under-discussed, and deeply human.

The Common Thread: Resilience

After hearing all of these stories side by side, something became impossible to ignore. Even though each diagnosis of GBS, CIDP, and MMN unfolds in a completely different way, the emotional journey behind them starts to look surprisingly familiar.

Damian, who helped facilitate the session, stepped in to bring that bigger picture into focus. His summary didn’t simplify the conditions, but it helped connect the dots in a way that grounded everything that had just been shared.

At a high level, the medical differences are clear.

Guillain-Barré Syndrome (GBS) is often acute and rapid. It can escalate within days or weeks, turning a routine illness into sudden paralysis and hospitalization. There is often very little time to process what is happening before treatment begins.

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), on the other hand, tends to unfold more slowly. It can be progressive, relapsing, and unpredictable over time. Many patients experience a long diagnostic journey, multiple specialist visits, and periods of uncertainty before reaching clarity.

Multifocal Motor Neuropathy (MMN) is often even more gradual and asymmetric, sometimes starting subtly in one limb and progressing slowly over years. Because of that slow progression, it is frequently misdiagnosed or overlooked in the early stages, which can delay treatment and understanding.

Three different timelines. Three different patterns. Three different ways the nervous system can be affected.

But then Damian brought the conversation back to what connects them all.

Because underneath those medical distinctions, the lived experience often overlaps in ways that matter just as much, if not more.

Uncertainty was the first common thread.

Every panelist, regardless of condition, described a period where answers were unclear. Whether it was emergency rooms trying to rule out stroke, specialists testing for ALS, or years of slowly worsening symptoms without a name, uncertainty shaped the earliest part of every journey. That lack of clarity creates its own kind of stress, not just physical, but deeply emotional.

Then came grief.

Grief for lost abilities. Grief for the version of life that existed before symptoms began. Grief for careers interrupted, identities shifted, and expectations rewritten. Some spoke about losing mobility overnight. Others spoke about losing function slowly over time. But the emotional weight of those losses was something everyone in the room recognized in their own way.

And then, adaptation.

Every story included it in some form. Learning to move differently. Adjusting treatments. Finding new ways to work, parent, travel, or simply exist in a body that no longer behaves the way it used to. Adaptation wasn’t a single moment, it was ongoing, sometimes daily, sometimes hourly. It became a skill as much as a necessity.

But the word that tied everything together most strongly was resilience.

Not the kind of resilience that suggests everything gets easier. But the kind that shows up when nothing makes sense.

Resilience looked like turning a devastating diagnostic journey into advocacy and education for others. It looked like Jenny refusing to accept “good enough” and pushing through multiple treatment pathways until she found what worked for her specific CIDP variant. It looked like Kristen staying active and in remission for over 15 years while continuing to lead community efforts. It looked like Dave rebuilding mobility through aqua therapy after ten months of paralysis. It looked like Charisma rebuilding a life after waking up from a coma at 19. It looked like Brenda transforming fear into advocacy after an ALS scare. And it looked like Ed refusing to let MMN take away his ability to create, compete, and stay physically active.

Different conditions. Different timelines. Different outcomes.

But the same underlying pattern: people adjusting, rebuilding, and continuing forward in ways that don’t always get seen from the outside.

Damian’s summary helped tie it together simply but powerfully, while these conditions may differ in speed, progression, and presentation, they all live in the same emotional landscape: uncertainty, grief, adaptation, and resilience.

And in a room full of people who have lived those realities firsthand, that shared understanding mattered just as much as any medical explanation.

As the panel came to a close for the GBS/CIDP Foundation International LA chapter, what lingered wasn’t just the medical details or the timelines of diagnosis. It was the humanity behind every story shared.

May is GBS/CIDP Awareness Month, and that context gave the entire conversation a deeper purpose. This wasn’t just a panel discussion, it was a reminder that awareness is built one story at a time. Every voice in the room contributed something different, yet together they formed a clear message: these conditions may be rare, but no one living with them is alone in the experience.

Across CIDP, GBS, and MMN, the medical journeys looked very different. Some unfolded in hours, others over years. Some began with sudden paralysis, others with subtle weakness that slowly changed daily life. But despite those differences, the need for connection, understanding, and community showed up again and again.

That’s where the importance of community becomes impossible to ignore.

For many newly diagnosed patients, the first instinct is isolation. Confusion, fear, and uncertainty can make it difficult to reach out or even explain what is happening. Jenny spoke about years of isolation before finding the foundation. Charisma described stepping away from social media during recovery. Ed reflected on how long it took to connect with others who truly understood his experience. And yet, each of them also pointed to the same turning point, the moment they realized they were not alone.

That moment changes everything.

It shifts fear into understanding. It replaces silence with language. It turns uncertainty into shared experience. And sometimes, it becomes the beginning of hope.

That is why gatherings like this panel matter so deeply. They do more than educate. They connect. They validate. They remind people that behind every diagnosis is a real person navigating real challenges, often while trying to rebuild a life they didn’t expect to redesign.

If there is one message that carried through every story shared, it is this: advocacy begins with awareness, and awareness begins with voice.

For anyone newly diagnosed or still searching for answers, the most important step may not be having everything figured out. It may simply be reaching out to a support group, to the foundation, or to someone who has walked a similar path.

Because no one should have to navigate these conditions in silence.

The full conversation from this awareness month panel is available here, and it offers something that statistics and medical summaries can never fully capture, the lived experience of resilience, in real time, from the people who are living it.

And perhaps that is the most important takeaway of all.

Awareness begins when patients stop suffering in silence and start sharing their stories