Inflammatory Neuropathies UK

Inflammatory Neuropathies UK Previously GAIN. Supporting people impacted by GBS, CIDP, MMN, and other Inflammatory Neuropathies in the UK/Ireland Anyone: young or old, male or female.

Registered Charity 1154843 & SCO39900
Welcome to the official Inflammatory Neuropathies UK page. THE FACTS

Acute
Guillain-Barré syndrome (GBS) and other variants

GBS, also known as Acute Inflammatory Demyelinating Poly(radiculo)neuropathy, is an acute disease of the peripheral nervous system in which the nerves in the arms and legs become inflamed and stop working. This causes sudden w

eakness leading to limb paralysis, and a loss of sensation, sometimes with pain. Other associated acute variants include AMAN, AMSAN, Miller Fisher

Chronic

Chronic Inflammatory Demyelinating Poly(radiculo)neuropathy (CIDP) and other variants
CIDP, once known as chronic GBS is a similar but longer lasting illness and regarded as a related condition. Other associated chronic variants include CIAP, Lewis Sumner (MADSAM), Multifocal Motor Neuropathy (MMNCB), Paraprotein Demyelinating Neuropathy

Who does this affect? The illnesses are neither hereditary nor contagious. Causes
This is a matter of much research. It is not really known however about 60% of people have suffered a viral or intestinal infection in the previous two weeks. These infections trigger an incorrect response in the immune system which attacks the nerves. Symptoms
Usually it starts with tingling and numbness in the fingers and toes with progressive weakness in the arms and legs during the next few days. In the mildest of cases, the weakness may arrest and cause only moderate difficulty in walking, requiring sticks, crutches or a walking frame. In some cases the weakness progresses and leads to complete paralysis of the legs, and may affect the arms as well. In about 25% of cases the paralysis progresses up the chest and the patient is unable to breathe on their own and needs to rely on a mechanical breathing machine (ventilator). The throat and face may be affected making swallowing impossible and the patient will require a tube into the nose or directly into the stomach to enable them to be fed. Diagnosis

Diagnosis is made from patient history and clinical examination, although this is not always conclusive as symptoms can be confused with other conditions. There are two helpful tests which are performed in most instances.
• Lumbar puncture, where under local anaesthetic a small amount of spinal fluid is taken for analysis;
• Electromyogram (EMG), which records nerve conduction and muscle activity. Treatment for GBS

GBS improves spontaneously, however there are certain factors that can assist recovery:
• Good nursing and medical care;
• Immunoglobulin infusion or plasmaphersis exchange in first few days;
• Rehabilitation such as physiotherapy and hydrotherapy

Treatment for CIDP

Like GBS, CIDP can improve without treatment. However recovery may be slow and illness can either get progressively better or worse or can follow a relapsing/remitting course. Most patients are given treatment in the forms of immunoglobulin, Plasmapheresis or corticosteroids. Other drugs may be used in some cases. Recovery

Most patients (80%) make a full recovery but many spend three months or more in hospital and a year or more to recover. A small percentage may be left with residual weakness, numbness or pain. Sadly some will never be able to resume their former life and in GBS death can occur in around 5 - 8% of cases, although highly unlikely in cases of CIDP. Uncommonly, GBS can recur or turn into CIDP

Inflammatory Neuropathies UK supports all those affected by GBS, CIDP and associated inflammatory neuropathies within the United Kingdom and the Republic of Ireland. If you are affected in any way, you can register for support and/or become a ‘Friend’ of the Charity for free. We will send you literature, our newsletters, and details of what’s going on. We can even organise a visit at hospital or at home. If you would like to help Inflammatory Neuropathies UK, perhaps by making a donation or becoming a ‘member’ of the Charity, then you can do that by following the links on the main website.

“The worst part about my GBS was that when I left hospital, I was completely abandoned. Abandoned by the medical profess...
04/06/2026

“The worst part about my GBS was that when I left hospital, I was completely abandoned. Abandoned by the medical profession who considered me 'fixed' and abandoned by my employer who let me go.”

For many people impacted by GBS, recovery continues long after discharge from hospital. Fatigue, pain, mobility challenges and emotional impacts can remain for months or even years.

Support and understanding matter at every stage of recovery. 🩷

Bryony's Camino Challenge!Tomorrow, 5 June, Bryony Eedy will set off on an incredible journey, cycling the Camino de San...
04/06/2026

Bryony's Camino Challenge!

Tomorrow, 5 June, Bryony Eedy will set off on an incredible journey, cycling the Camino de Santiago to raise funds for Inflammatory Neuropathies UK.

We're incredibly grateful to Bryony for taking on this challenge and helping to raise awareness of these life-changing conditions.🩷

If you'd like to support Bryony's fundraising efforts, you can donate here👉 https://www.justgiving.com/page/bryony-eedy-1

Please join us in wishing Bryony the very best of luck as she begins her adventure! 🚴‍♀️🙌

Would you like to share your experience of being diagnosed with  ? Do you want to help the next group of researchers com...
03/06/2026

Would you like to share your experience of being diagnosed with ?

Do you want to help the next group of researchers coming through the system, and encourage them into working with CIDP?

An MSc Health Psychology student at Aston University, Ibtisam, is conducting a research project exploring the journey to diagnosis, and the lived experiences of individuals with CIDP.

If you choose to take part, you would be invited to have an online conversation with Ibtisam, at a time that is convenient for you. Your contribution would help provide valuable insights into the challenges, experiences, and perspectives of people living with CIDP.

Participation is entirely voluntary, and your story could play an important role in improving understanding of living with CIDP.

To take part, email Ibtisam via her student email - [email protected]

This Volunteers’ Week, we want to thank every person who gives their time to support people impacted by Inflammatory Neu...
03/06/2026

This Volunteers’ Week, we want to thank every person who gives their time to support people impacted by Inflammatory Neuropathies 🩷

From peer support to fundraising and events, volunteers help make our community stronger every day, and we wouldn't be what we are without them, so THANK YOU! ✨✨

Our MMN Get Together takes place next week 😁📅 Monday 9th June @ 7pm💻 Head to www.inflammatoryneuropathies.uk/get-togethe...
02/06/2026

Our MMN Get Together takes place next week 😁

📅 Monday 9th June @ 7pm
💻 Head to www.inflammatoryneuropathies.uk/get-togethers and click the third pink link!

This is a welcoming space to connect with others impacted by Multifocal Motor Neuropathy, whether you’d like to chat or simply listen.

Awareness Month may be over, but for people impacted by Inflammatory Neuropathies, the reality continues every single da...
02/06/2026

Awareness Month may be over, but for people impacted by Inflammatory Neuropathies, the reality continues every single day.

Symptoms don’t stop on 31st May. Appointments, uncertainty, recovery, relapses, support needs and daily challenges continue long after the campaigns end.

That’s why we’ll keep sharing stories, resources, support and community all year round 🩷

Thank you to everyone who helped raise awareness throughout May, whether you've been sharing our posts, telling your story, attending events or simply learning more. Every conversation matters.

We're Hiring a Marketing Executive.Want to use your marketing skills to make a genuine difference?Inflammatory Neuropath...
01/06/2026

We're Hiring a Marketing Executive.

Want to use your marketing skills to make a genuine difference?

Inflammatory Neuropathies UK is looking for a Marketing Executive to help us raise awareness, grow our community, and reach more people impacted by Guillain-Barré Syndrome, CIDP, MMN, and other Inflammatory Neuropathies.

We're a small charity with a big impact. Every day, we help people feel informed, supported, connected, and less alone.

This role is perfect for someone who enjoys creating content, building engagement, telling powerful stories, and wants their work to have real meaning.

✅ £28,500 salary
✅ Hybrid working
✅ Home-based with one day per month in Lincolnshire
✅ 25 days annual leave plus bank holidays
✅ Supportive team and opportunities to grow

You don't need to know everything already. We're looking for someone with creativity, enthusiasm, and a passion for connecting with people.

If you're tired of marketing products or working for a b y the numbers organisation, and want to help change lives instead, we'd love to hear from you.

Find out more and apply today.

https://www.charityjob.co.uk/jobs/inflammatory-neuropathies-uk/marketing-executive/1069887?tsId=36

As GBS and CIDP Awareness Month comes to a close, we want to say a heartfelt thank you to everyone who supported Inflamm...
31/05/2026

As GBS and CIDP Awareness Month comes to a close, we want to say a heartfelt thank you to everyone who supported Inflammatory Neuropathies UK throughout the month 🩷

Over the past few weeks we have:
⭐ Hosted webinars and online support sessions
⭐ Launched new reports and shared information
⭐ Brought people together through our Get Togethers
⭐ Shared awareness and educational resources
⭐ Celebrated the official opening of our office
⭐ Continued important conversations around Inflammatory Neuropathies and patient support

Most importantly, we’ve continued building a supportive and understanding community for people impacted by GBS, CIDP, MMN, and other Inflammatory Neuropathies.

Awareness remains super important, not just for one month of the year, but every single day. Greater understanding can lead to earlier diagnosis, better support, stronger advocacy, and less isolation for those living with these conditions.

Thank you for being part of our community and helping us continue this work. 🩷

A little announcement for our June Lancashire & Cumbria Get Together!We’re looking forward to welcoming Tim Smith, who w...
30/05/2026

A little announcement for our June Lancashire & Cumbria Get Together!

We’re looking forward to welcoming Tim Smith, who will be joining us to give a short demonstration on creating a summer planter. 🪴 Tim previously visited the group back in 2016, and we’re pleased to have him returning for next month’s gathering.

While our support groups remain focused on connection, support, and sharing experiences around Inflammatory Neuropathies, moments like these can also provide a relaxed opportunity for members to socialise and enjoy time together in a supportive space. We hope everyone attending has a lovely afternoon.💚

Details: Saturday 6th June @ 1.30pm in Catterall Village Hall , Garstang Road, Catterall, PR3 1XN

More info: https://www.inflammatoryneuropathies.uk/get-togethers

Address

3 Mill House, Carre Street
Sleaford
NG347TW

Opening Hours

Monday 9am - 4:30pm
Tuesday 9am - 4:30pm
Wednesday 9am - 4:30pm
Thursday 9am - 4:30pm
Friday 9am - 4pm

Telephone

+447878090965

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