A new European white paper has put the spotlight on Inflammatory Neuropathies and, reading it, we found ourselves thinking, "We've been saying this for years."

The interim findings from the government's Timms Review into Personal Independence Payments (PIP) are out, but what do they mean for people impacted by Inflammatory Neuropathies

Community means something different to different people. This isn't an argument against place based communities, it's an argument against forgetting communities of interest

Our new Impact Report is out now. But what does it mean, what have we done, and what are we doing.

Why do we respond to public consultations. Because you need to be heard.

We had some excellent results from the My Neuro Survey findings, but we wanted to dig deeper.

This year, we made the decision to attend the Association of British Neurologists Conference. On paper, it’s a professional gathering of experts. But for us at Inflammatory Neuropathies UK, it’s something much more human than that. It’s all about people, and more specifically our Community. People who are living with rare, often misunderstood conditions. People who may still be searching for a diagnosis. People who don’t yet know that support, information and community exist

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, cli

You join us for the fourth in our weekly blogs dedicated to taking an accessible look at Multifocal Motor Neuropathy - or MMN. In previous editions, we've looked at what MMN is, the common MMN symptoms, and how you might expect MMN to be diagnosed. So what happens when someone finally gets a diagnosis of MMN? What does treatment look like? Can it be treated? Can it be cured? Let's start with - can it be cured? The short answer is, no. There is no current cure for MMN at the

You join us for our third in our series of accessible, bite sized blogs all about MMN. In week one, we took a general overview of the condition, and last week we investigated some of MMN's classic symptoms and warning signs. This week, let's look at what happens next. Misdiagnosis and Timeline We'll be honest, this part is hard. Officially, your time to diagnosis should be around one to two years. However - and it's important we say this is anecdotal from conversations with

A huge thank you to Megan for sharing her experience of Multifocal Motor Neuropathy, from early MMN symptoms through diagnosis and life after. The time to diagnosis discussion has come up a little recently on our social channels. If you're happy to share in the comments - what was your timeline like? "I'll be the first to say it, my MMN story isn’t exciting. For a long time I didn't think it was worth sharing it because who is interested in average, but then I realised maybe

Last week we took a look into MMN as a whole - what is this rare condition? What does diagnosis and treatment look like? And of course, what are the symptoms of MMN? This week, we're diving into that last question in a little more detail. We'll look at some of the early signs, and key symptoms you should look out for. Early Signs of MMN MMN often starts subtly, which makes it easy to miss in the early stages. Many people later diagnosed with the condition noticed a weakness

As February is MMN Awareness Month, it is time to not just shine a light on MMN, but also on ourselves about how we support people impacted by MMN.

Multifocal Motor Neuropathy , or MMN for short, is a rare, life-long condition that affects the motor nerves, which control muscle movement. This leads to muscle weakness, often starting in the hands or arms. MMN is very rare, impacting 0.6 people per 100,000. Anyone can get MMN, but it is more common in older men than women. However, we have met people from all walks of life living with the condition. MMN is not infectious, meaning you can't pass it along to anyone else. Cau

When you work with your hands for a living, what do you do when those hands stop working? Thank you to Jason Miles for sharing his GBS story in our pre-Christmas Newsletter. This is a powerful story touching on emotions around losing work and passion, over indulgence, and the importance of letting others help you. Here's his story, IN his own words: What do you do when a tradesman’s hands stop working? I’ve asked myself that question more times than I can over these last thr

Thank you, Leanne, for sharing a story about experiencing Guillain-Barré Syndrome (GBS) as a young mother. I was a healthy 34-year-old woman, the mother of a one-year-old daughter and a three-month-old son, living a life full of energy and family moments. Then, almost without warning, it began - weakness in my legs and a strange pins-and-needles sensation in my hands and toes. At first, it seemed minor, but the symptoms grew, gradually stealing my strength. I tried to seek he

If you're living with GBS, CIDP, MMN, or another Inflammatory Neuropathy, you may have questions about how today's budget impacts you. Are you having trouble getting your head around what was said, or just fancy a quick summary of the key points? Well, if so, our Chief Executive is here with his traditional reflection on the budget and what it means for people impacted by Inflammatory Neuropathies, and for the charity itself. To be honest, there wasn’t a great deal of ant

It started suddenly. Vimal Pedro Patel began feeling unwell, and within 48 hours he was completely paralysed from the neck down. He sat down with us to share his story of recovery and running. Pedro was admitted to intensive care and diagnosed with a particularly severe case of Guillain-Barré Syndrome (GBS) that left him weak, in pain, and unable to move anything except his eyes. He would spend almost six months in ICU, followed by two months on a ward and a long period of re

I’m a big fan of holidaying in Greece and usually travel solo arranging all elements of my holiday independently. In late September 2023...

The residuals of an acute Inflammatory Neuropathy like GBS, or the ongoing impact of a chronic condition like CIDP, can often mean...