Inflammatory Neuropathies UK

It's that time again - it's the day of our online #GBS Get Together! We'll run from 2pm and anyone living with the impact of GBS is welcome to join, chat, and swap stories.

Here's your link: www.inflammatoryneuropathies.uk/get-togethers

See you at 2pm!

Using Lego to better understand Building Connections today with colleagues from across Europe and Africa today

Great meeting representing patient views around #CIDP in Berlin yesterday. Always working in collaboration

We have asked Rich to update on our socials so keep an eye on here to find out what he has been up to and what he has been finding out

Part of the trip is around the CIDP Principles of Care project which Rich is helping to steer, with the rest of the trip around representing a he interests and views of the UK community.

Rich is off on his travels again. This time he is going to Berlin for a series of meetings with colleagues from across Europe.Africa, and the US. He will be joined by @inflamneurouk volunteers and members from the UK and Ireland.

Ever wondered where you can donate plasma? There aren’t many direct donation sites… but did you know 55% of your blood is plasma! When you give blood, you’re also helping create lifechanging treatments to give people with, for example, #CIDP their independence!

#IPAW

Chris's fundraiser for Inflammatory Neuropathies UK Help Christopher Morton raise money to support Inflammatory Neuropathies UK

A big 🙌 to our very own Chris Morton who is taking part in the Great Scottish Run today. We know he will blast it but let’s all cheer him on. Support him at www.justgiving.com/page/chrismo...

After a cuppa, we heard from Ian (#GBS) & Jill (#CIDP) in our IN my shoes session. Two powerful stories of resilience, support & hope.

Much more to follow in videos and pics!

Huge thanks to all who joined us today, safe travels home. See you in 2026!

#BGT25

After lunch, we've enjoyed hearing from Dr Johnson on her fascinating work on decoding #InflammatoryNeuropathies.

Then #MakingtheMostofNow's Clive Phillips and our Ambassador, Ben Watson spoke us through the #TourDeMMN cycle, and learning to accept limitations, and ask for help.

#BGT25

The BIG Get Together is underway.

CEO, Rich, welcomed us before handing off to the board who told us why they volunteer their time, with a highlight on legacy giving (more this month), & plasma donations (more this week).

Now Rich is taking us through the next decade of the charity!

#BGT25

Due to unforeseen circumstances, the Inflammatory Neuropathies UK office will be shut until Tuesday 30th September. You can still call and leave a message on 01529 469910 or email hello@inflammatoryneuropathies.uk, but we won't be able to respond until Tuesday.

Even while surrounded by love and support, #GBS can be isolating when people can't understand the way your body, or mind, feels.

You can join a group of people who do get it though. Our Online #GuillainBarre Get Together meets in an hour at 2pm

www.inflammatoryneuropathies.uk/get-togethers

#NHSEngland has published its new Adult #Neurology Services specification. Our CEO contributed feedback on behalf of the #InflammatoryNeuropathies community earlier this year, here's his view on the spec:

www.inflammatoryneuropathies.uk/post/new-spe...

"CIDP causes... summer to be a minefield. I can't just enjoy a sunny day, I need to plan each move. Then at night? It feels like I'm trying to sleep on a bed of nails"

During a #heatwave, some #InflammatoryNeuropathies like #CIDP can feel more pronounced due to the temp.
Pins & needles can feel more prominent, especially at night after a day outside. Take precautions when out - drink more water, seek shade, and sit down/rest frequently.

We're breaking down results to a recent survey. You told us emotional #wellbeing for those with #GBS, #CIDP, #MMN & other #InflammatoryNeuropathies is a vital focus point. Please see Facebook, Insta or LinkedIn for the longer form post!

#MentalHealth #InflammatoryNeuropathiesUK

GBS still causes fear. I had it 10 years ago. No physical residuals either. I woke up in tears recently because my arm was tingling. I'd only slept on it funny.

With so much physical damage from #GuillainBarreSyndrome, it can be easy to overlook the emotional impact of #GBS. It helps to talk:

Get Together inflammatoryneuropathies.uk/get-togethers

Emotional Support inflammatoryneuropathies.uk/health

Peer Support inflammatoryneuropathies.uk/peer-support

Some #behindthescenes shots from our filming session in Kendal. A huge thanks to Zoe for sharing her #GuillainBarre story and the #KendalWasps for allowing us into their #rugbyclub to film.

We can't wait to reveal these impactful stories of #GBS to the world soon.

#bts

Did you know 500,000 litres of #plasma from blood & direct plasma donations could help approx. 2,463 people with #CIDP? An amazing result, but because so many other conditions, including #InflammatoryNeuropathies like #GBS require #immunoglobulin, the #NHS always need more.

Learn: www.blood.co.uk

"There was no information on the internet about having a child after GBS and my neurologist didn’t think it was a good idea, but I knew that I needed to live, I wanted to have a child with the man I love, just like everyone is entitled to."

A huge thank you to Nicole for sharing her emotional #GuillainBarreSyndrome story.

#GBS struck at the height of the pandemic - Christmas 2020. Here's her story:

inflammatoryneuropathies.uk/post/nicoles-story-gbs

#InflammatoryNeuropathiesUK #RareCondition #covid #NHS

Well done to Pete MacKenzie who took over BBC Radio nan Gàidheal during drive time to share three songs that mean a lot to him, and share a little of his #GBS journey via host, Derek Pluto.

Pete's segment is from 36 mins: www.bbc.co.uk/sounds/play/...

#GuillainBarreSyndrome

A very happy birthday to Christine Beattie, celebrating her 70th today. Usually the person of honour receives the gifts, but Christine has kindly organised a fundraiser on her special day after experiencing #GBS in 2014.

www.justgiving.com/page/christine-beattie-2

Thank you, Christine! 🎂🎈

These aren't easy to stories to read and we know they're even harder to share and relive. However, these posts do get attention and the more people learn, the better care, treatment, support will become in the UK, so thank you 🩷

#GuillainBarreSyndrome #GBS #RareConditions

"Good luck Hollingworth Lake Rowing Club - 24 hour row!"

Good luck to #HollingworthLakeRowingClub who are taking on 24h of #rowing to raise funds for #InflammatoryNeuropathiesUK!

They're supporting member Jason Hardman who has been diagnosed with #guillainbarresyndrome, you can support them at justgiving.com/page/hlrc-24hr-row

#GBS

Are you part of the #InflammatoryNeuropathiesUK group on Facebook? You can join 4,000+ people with experience of #GBS, #CIDP, #MMN, #Vasculiticneuropathy, #MADSAM, #SIDP, & more.

facebook.com/groups/727400487277814 or search GBS/CIDP/MMN/Inflammatory Neuropathies UK Community on Facebook.

A dark haired woman is in conversation with a light haired woman. A text overlay reads, "Peer support pulled me back from a very lonely void".

It helps to talk. If you've experienced #GBS you may feel alone, even while surrounded by loved ones. We can link you with someone who has lived it for a conversation, a vent, or just a friendly ear.

inflammatoryneuropathies.uk/peer-support

We've had an incredible July. One major highlight was kicking off a filming project that has been over a decade in the making. These stories of #GuillainBarreSyndrome are coming from the North West of England and we can't wait for you to hear them soon.

#documentary

Wednesday was spent with colleagues from EPODIN and Takeda. Really good discussions hearing from other patient advocacy groups from across Europe, the latest on the vast Europe wide patient led survey project around #CIDP, and issues being faced by people impacted by #InflammatoryNeuropathies.

Concerns such as 'how am I supposed to hold down a job when I don't know when my symptoms will flare up' and 'how will my family cope without PIP, I can barely make ends meet now'

Keep an eye on our socials and we will keep you updated with the latest." #PIP #WelfareReforms

We will continue to watch with interest and I urge MPs to think about the consequences for people of voting through the proposals. I can assure you all that Inflammatory Neuropathies UK will continue to campaign on this issue and highlight the concerns of our community.