'I had to have chemotherapy after catching a flesh-eating disease in the Amazon'
Phillippa Stewart took on the challenge of a lifetime when she began a three month, world-first kayaking journey down an Amazonian river.
But things took a turn for the worse when she contracted a deadly, flesh-eating parasite along the way. Now, Philippa wants to raise awareness about leishmaniasis and the fact 1 billion of the world’s poorest people are at risk.
‘The expedition was the brainchild of my friend Laura, who rang me up and asked if I fancied joining her, her friend Ness, and a team from Guyana’s Wai Wai community on a “world-first kayaking expedition through the Amazon jungle?”‘ says Philippa.
‘I think I must have heard: “Do you want to float down a river through the jungle for three months?” because I immediately jumped on the idea without realising how brutally physical it was going to be.’
Philippa had previously spent time reporting on deforestation in Peru and Brazil where she fell in love with the Amazon.
‘Paddling 1,041km down the Essequibo River appealed because it was a chance to spend time in complete wilderness and learn from that and the team around us – as well as understanding what was going on with the gold mining and deforestation further downriver.’
When a jaguar invaded the area where Philippa and her team were staying, she was surprisingly calm.
‘Bizarrely, the stress response that I felt when we saw the jaguar was not dissimilar (although on a much larger scale) to when you get a WhatsApp message or notification on your phone.
‘Spending time in the wild has definitely changed how I act in the concrete jungle.’
The journey to the source of the river took nearly three weeks of hiking through the humid, dense Amazonian rainforest.
‘It was also the hardest physical thing I have ever done,’ says Philippa. ‘I was knackered before we had even started kayaking back down the river.
‘We were guided by members of Guyana’s Wai Wai community, which was a real highlight for me, bonding with the team and learning about how to survive in the jungle.
When Philippa contracted the parasite, it wasn’t as dramatic as you might imagine. The first sign that anything was wrong was a bug bite.
But when the bite refused to heal – even by the time Philippa returned to the UK – she began to suspect that something might be seriously wrong.
‘I remember putting my hammock up one evening in an area surrounded by sandflies and I thought to myself: “These are the things to avoid if you don’t want a flesh-eating parasite,”‘ explains Philippa.
‘I was bitten, but I didn’t think much more about it as in the jungle you are usually covered with some sort of bite.
‘However, when I returned to the UK the bite still hadn’t disappeared. In fact, it was growing, getting deeper, pusy and then scabbing over.
‘I went to London’s walk-in clinic at the Hospital for Tropical Diseases to check it out. After a biopsy on the bite, I was told I had cutaneous leishmaniasis and that if I didn’t treat it there was a risk it would spread to my nose and soft pallet and eat them away.’
Philippa says that despite the potential severity of her condition, the bite itself didn’t itch or hurt at all.
‘Apart from the vampire-like wound to my neck, it didn’t impact my day-to-day life,’ says Philippa.
‘The treatment, however, was brutal. Because Leishmaniasis is so underfunded and under-researched, the treatment is a form of chemotherapy that dates back to the 1940s.’
Philippa’s heart and liver functions had to be closely monitored, as did her veins as there was a risk that they could close up.
‘By the end of the 21 days on an IV, my body ached in ways I’ve never felt,’ says Philippa.
‘I was shuffling around barely able to move. What I found more terrifying than anything I encountered in the jungle, was the global healthcare inequality I came face-to-face with when I returned.’
Philippa was deeply affected when she heard about how friends back in Guyana were forced to treat the disease if they caught it.
‘My friend Fay said she poured burning cow fat onto the lesion in order to heal it,’ says Philippa.
‘I asked her why she didn’t get treated in a hospital and she explained that she could, but she would have to spend five-six weeks away.
‘When you are living in a remote area, healthcare or travel costs are prohibitive, or if you have a family to look after, spending weeks in hospital isn’t simple.
Another friend, Philip Suse, told Philippa that they treat the lesions by ‘crushing turtle shell into them. “Faster than getting a whole month of injections”, he told me in a message.’
Philippa says that while local treatments may be effective at healing the sore, the problem lies in potential secondary complications further down the line, and little research has been done into this area.
‘Sometimes the parasite can spread to the nose and soft pallet and eat them away and, in the most serious cases, require facial reconstruction,’ she explains.
‘Without access to treatment, this can lead to social stigma and economic loss in many parts of the world. It was because of a risk of this secondary infection that I found myself sat attracted to a drip daily for three weeks.’
Since recovering from her illness, Philippa is now keen to spread the word that more needs to be done.
‘Visceral Leishmaniasis – the most severe form of the disease – is the second biggest parasitic killer after malaria yet most people have never heard of it. Why? Because the people who get it are usually poor and live in remote areas. That is messed up.
‘Leishmaniasis impacts nearly 1 billion people in 98 countries. Watch out for sandflies on your next trip to Ibiza.’
Philippa says one underreported fact about climate change is that it is linked to the spread of disease.
‘The World Health Organisation highlights that the disease is linked to environmental changes such as “deforestation, dam building, irrigation schemes and urbanisation”.
‘Climate change is also being implicated for the movement of neglected tropical diseases around the world. As well as helping those in need around the world, if we don’t give neglected tropical diseases the attention they deserve, they may become a practical problem closer to home too.’
Since being diagnosed, Philippa has been working hard to give talks and raise awareness about the fact more needs to be done in this area.
‘These are not just the problems of the poor, these are problems for humanity,’ she says. ‘I’ve also been writing a book about our journey.
‘I received a bizarre message from a doctor on Twitter who said: “in a funny way I am glad this has happened to you.” In a funny way, I am too.
Despite the drama, Philippa says she would go back to the Amazon in a heartbeat.
‘It was the journey of a lifetime,’ she says. ‘It was unfortunate that I picked up a parasitic friend, but perhaps I can turn that into a positive outcome for others. Fingers crossed.’
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