Why GBS and CIDP Awareness Month matters, and why I’m asking you to get involved

Every May, something powerful happens.

Across the UK and beyond, people impacted by Inflammatory Neuropathies all look to raise awareness and talk about their condition. 

GBS and CIDP Awareness Month isn’t just a date in the calendar for us at Inflammatory Neuropathies UK. It’s one of the few moments in the year where our whole community (people living with conditions like Guillain-Barré syndrome (GBS), CIDP, and other Inflammatory Neuropathies, along with their families, clinicians, and supporters) can all raise our voices together.

And that matters more than most people realise.

Why awareness matters 

Inflammatory Neuropathies are rare. That means too many people still face delays in diagnosis, confusion, or that awful feeling of having to explain your condition again and again. It’s even worse when no one has even heard of it and we all struggle saying the names!

Raising awareness helps to change that.

It helps someone get diagnosed quicker.

It helps a GP join the dots sooner.

It helps a family member or a friend understand what’s really going on.

And just as importantly, it helps people living with these conditions feel less alone.

At Inflammatory Neuropathies UK, raising awareness isn’t a side project, it’s one of the key things that we do. Because when more people understand these conditions, everything gets a little bit easier and a little bit better. 

But as you know, our charity is only little, and we can’t do it on our own.

This month only works if people join in

Awareness Month isn’t just about sharing messages, it’s about working as a community. After all we are IN this together. 

This year, we’re focusing on two ways to get INvolved that anyone can take part in.

The IN the Water” Challenge  

We’re inviting you to get “IN the water” in whatever way works for you:

• Go for a swim

• Take a cold dip

• Paddle in the sea

• Or simply put your hands in a bowl of cold water at home

Why water?

Because for many people living with Inflammatory Neuropathies, sensations like cold, tingling, pain, or numbness are part of daily life. This challenge is a small, symbolic way to connect with that experience. It also helps to start conversations, and raise awareness. 

It’s also visible, shareable, and just a bit fun.

And that’s the point. Awareness doesn’t have to be heavy to be meaningful.

Shout and Share 

If the water challenge is about doing, this is about talking.

We’re asking you to shout and share:

• Tell people about your condition

• Share your story (as much or as little as you’re comfortable with)

• Post our awareness graphics on social media

• Start a conversation at work, with friends, or in your community

So many people in our community say the same thing:

“No one had heard of this until it happened to me.”

This is how we change that.

Not through perfect messaging, but through real people talking, sharing, and being visible.

Our role, and yours 

As a charity, we’ll be doing everything we can this month:

• Sharing information and stories

• Supporting people across the UK

• Working with healthcare professionals

• Amplifying the voices of our community

But the reach we have on our own is limited.

The reach we have together is something else entirely.

Every post shared.

Every conversation started.

Every pair of hands dipped in cold water.

It all adds up.

A small ask, with a big impact

If you take one thing from this, let it be this:

You don’t need to do something huge to make a difference.

Take part in the IN the Water challenge.

Share a post.

Tell one person about your condition.

That’s how awareness grows. Person to person, story by story.

And that’s how we build a world where Inflammatory Neuropathies are better understood, better recognised, and better supported.

So, let’s do this together 

I’m incredibly proud of this community.

Not just for the resilience people show every day, but for the way you all support each other and step up when it matters.

This month is one of those moments.

So, in whatever way you can, please get involved.

Let’s make some noise, together.