Guillain-Barre syndrome: What is it?
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Hey everyone, how are you? So I hope you don't mind, we're going to start off today getting a bit personal because it just so happens I really relate to what we're talking about today. I still remember that pins and needles feeling in my legs, the weak muscles being hooked up to all these weird machines...

Even making friends with people in the hospital, to be honest. And, you know, looking back now, there's only a few kind of hazy memories because it was a long time ago. I was only six years old. To me, what was going on was a total mystery.

But what I had was Guillain-Barre syndrome, or GBS for short. It's a really rare condition where your immune system attacks nerve cells, causing muscle weakness and paralysis.

Now India is facing an increasing number of GBS cases. There have been more than 160 reported cases since early January in Pune and seven people are thought to have died. I'm Aitka Farooq and this is What In The World from the BBC World Service. Today we're breaking down what GBS is and what's behind this outbreak in India.

So we'll get into the situation in India in a bit. But first, let's go through the disease and try to understand a little bit more about it. I'm joined by BBC health reporter Michelle Roberts, who's with me here. First off, what is GBS and what causes it?

So it's a condition that affects the nervous system, the nerves, and you can get symptoms like tingling, pins and needles, weakness of the muscles. Often it starts in the arms and legs. That's what you first notice. So, you know...

real weakness there and then it can spread elsewhere. Now, in terms of what's causing it, it's not always clear. It's really quite rare. Usually affects adults more often than children. But I understand that you had it when you were really quite young. But...

Sometimes it's linked to an infection. So in some of the patients that doctors see, if they dig into their history, they find that the week or month before people have caught sort of either a bacterial or a viral infection, it might be sort of a bit of a stomach bug. And so if you're drinking water that's

being contaminated or unpasteurised milk or undercooked meat, sometimes that can give you that type of infection. And some people have this condition because they've already got some vulnerabilities or some underlying conditions. It's still very rare, but some people seem to then...

develop this GBS. And do we know, has there been an outbreak like this before in a part of the world? Is this quite rare that this is happening now? So the condition itself is rare for a start, but there have been other outbreaks like this

But in terms of it being contagious, it's not contagious in the way that you would sort of think of a regular disease. It's something that triggers off in certain people. And it's sort of almost like an autoimmune where your own immune system is fighting against your body. It was trying to sort of get on top of an infection, for example, but then it's going overboard and unfortunately causing the symptoms on your own nerves.

I was in hospital for a really long time with it. Tell me, is that common? What's the recovery like from this? So it varies, but it can be very serious, which is why doctors do recommend hospital treatment. You want to keep a close eye because obviously if the muscles aren't working that well, you worry about breathing, other things.

And the recovery can be quite long. There's no brilliant test for it. So it's not like you can do one blood test and go, yep, you've definitely got it. And in terms of treatment, a lot of it is giving drugs to help dampen down the immune system, but then also managing the long term recovery from it. So it's something that can be a bit of a long haul for many. Hmm.

And because there is no known cure, I mean, what is the kind of rehabilitation period like from something like this as well? Because there's a lot of muscle weakness as well, right? I remember that from my own personal experience. That's right. And I mean, obviously, if you've also been bedridden,

bound anyway, that will cause some muscle weakness too. It can vary per person. So there's no one set route of recovery. Some people recover quicker than others. Some people don't recover as much. They don't get back to the full amount. Because it's such a rare condition,

it's difficult to know the full picture of it. You know, we're still trying to get more and more data on it. But thankfully, it is rare. You mentioned it's not infectious. So why are there so many cases in India at the moment? So

So it can be linked to different things. So although Guillain-Barre itself is not an infection, it's not something that somebody could spread to somebody else. The things that can trigger it in some people are infectious diseases. So if you've got a polluted water source, for example, the same people are using, then that

puts that kind of trigger in that population. And then unfortunately, some people might then become ill with GBS. Thank you so much for coming on and explaining all of that. It's been great to hear. Welcome. Thank you. Thank you.

Let's look at India now. William from the What in the World team spoke to Vandana Ban, who is a BBC reporter here in London. So what do we know about the outbreak of Guillain-Barre syndrome in India? Most of these cases have been, we believe, in the city of Pune, which is in the state of Maharashtra, which is a central state in India. But the

But first of all, there have been about seven reported deaths, we believe. And according to local media reports, one of those deaths has actually been a 10-year-old boy in the state of Tamil Nadu. And is there any sense of what caused the spread?

The outbreak in Pune of GBS is being traced back to a pathogen or a microorganism called Campylobacter jejuni. Now, this is the biggest driver of GBS worldwide. And here in Pune, this microorganism contaminated their drinking water.

Now, how did that happen? An investigation revealed that there was E. coli present in samples of water found in bore wells. And a lot of the drinking water in India is from these bore wells in these communities. How did it get infected? Well, in parts of India, these water lines and drain lines run side by side. So drainage water can get mixed in with your potable water, therefore contaminating it.

You mentioned that a child is among those who has died. How are people reacting to this news? Of course, there's a lot of anxiety at the moment, especially with cases rising, the state of Maharashtra calling this an outbreak at the moment. And Pune itself is actually an upcoming IT city. So a lot of students, a lot of young people in the city at the moment and online, on social media, a lot of people actually now saying that

should I be concerned about what's happening? Originally, at the start of January, it was a few cases. Now it's more than 160. There is anxiety. There is concerns as to what should I be doing. There's a lot of messaging out there right now to be careful about what you're eating, especially things like paneer, which is very common food in Indian cuisine, cheese. Be careful about how you're cooking your rice and making sure that you are

boiling your water before drinking it. So a lot of talk about this online at the moment. And so this change in behavior isn't just at home. It's also at restaurants. It's basically every aspect of daily life. Absolutely. A lot of people are avoiding eating out and there is messages out there on these platforms and from officials as well to avoid eating out, to make sure that you are just cooking the food at home because you don't know how it's been prepared in those other places. Absolutely.

And GBS is rare, but it's not entirely unheard of. Do we know why this specific outbreak is of such concern?

I think any outbreak where one can be paralyzed for the rest of their life is of great concern in itself. And then you mix in the fact that India consists of more than one billion people living in close proximity to each other. And we know that this has been caused by contaminated water from these bore wells, which is bad.

for your information, a well that's dug deep into the ground to extract water. And these can be more than 20 metres deep, so really deep into the ground. And many people, many communities in India and in other parts of the world do use this type of drinking system. So we know that's where the contamination came from and that's what's causing GBS.

But a lot of people in India might not know this, and they're still using and drinking that water on a day-to-day basis. They're still not boiling their water on a day-to-day basis, and that's what's of concern. At the moment, we know that the authorities have said that they are trying to treat these borewells and chlorinate them and clean them, but there is the risk that if they don't do this quick enough or if it's not a red flag for the rest of India and for all these other states to also look at their borewells,

And to look at if there is bacteria present there, that this could be a bigger outbreak than what it is right now. And bacteria illnesses, they don't respect borders. Are there other countries that have dealt with an outbreak of GBS that India could look to?

Absolutely. I mean, this could be one of the bigger outbreaks in the world. But one of the biggest ones that we've seen in recent years was actually in 2019 in Peru. Now, this South American country had 1,120 cases in 2019, and 683 of those cases were just reported in two months alone.

Now, unlike in India right now, where we believe most of these cases are predominantly in the city of Pune, in Peru, it was reported across the country. And they didn't have exact statistics on how many people might have died from GBS. It was four reported deaths.

but more suspected. So I think right now India want to avoid that, making it a bigger than, you know, it is right now, like it was in Peru. They want to contain it to Pune, to the state of Maharashtra. And like we talked about, cleaning those bore wells and making sure it's chlorinated and looking at the other bore wells across the country is really what India will want to be doing right now. Vandana, thanks for explaining that. Thank you so much for having me.

Thank you for listening to today's episode. GBS is something we're trying to learn more about all the time. But an important thing to remember is that everybody's body reacts differently when they get an infection. It's about how your immune system responds. So although most people who drink polluted water in India will get ill, only a tiny number of them will end up with GBS.

And that's it for today. I'm Itkra Farouk and this is What's in the World from the BBC World Service. We'll see you next time. Bye.

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