• DNDi_Logo_No-Tagline_Full Colour
  • Our work
    • Diseases
      • Sleeping sickness
      • Visceral leishmaniasis
      • Cutaneous leishmaniasis
      • Chagas disease
      • Filaria: river blindness
      • Mycetoma
      • Paediatric HIV
      • Cryptococcal meningitis
      • Hepatitis C
      • Dengue
      • Pandemic preparedness
      • Antimicrobial resistance
    • Research & development
      • R&D portfolio & list of projects
      • Drug discovery
      • Translational research
      • Clinical trials
      • Registration & access
      • Treatments delivered
    • Advocacy
      • Open and collaborative R&D
      • Transparency of R&D costs
      • Pro-access policies and IP
      • Children’s health
      • Gender equity
      • Climate change
      • AI and new technologies
  • Networks & partners
    • Partnerships
      • Our partners
      • Partnering with us
    • Global networks
      • Chagas Platform
      • Dengue Alliance
      • HAT Platform
      • LEAP Platform
      • redeLEISH Network
    • DNDi worldwide
      • DNDi Switzerland
      • DNDi DRC
      • DNDi Eastern Africa
      • DNDi Japan
      • DNDi Latin America
      • DNDi North America
      • DNDi South Asia
      • DNDi South-East Asia
  • News & resources
    • News & stories
      • News
      • Stories
      • Statements
      • Viewpoints
      • Social media
      • eNews Newsletter
    • Press
      • Press releases
      • In the media
      • Podcasts, radio & TV
      • Media workshops
    • Resources
      • Scientific articles
      • Our publications
      • Videos
    • Events
  • About us
    • About
      • Who we are
      • How we work
      • Our strategy
      • Our donors
      • Annual reports
      • Our prizes and awards
      • Our story: 20 years of DNDi
    • Our people
      • Our leadership
      • Our governance
      • Contact us
    • Work with us
      • Working at DNDi
      • Job opportunities
      • Requests for proposal
  • Donate
  • DNDi_Logo_No-Tagline_Full Colour
  • Our work
    • Diseases
      • Sleeping sickness
      • Visceral leishmaniasis
      • Cutaneous leishmaniasis
      • Chagas disease
      • Filaria: river blindness
      • Mycetoma
      • Paediatric HIV
      • Cryptococcal meningitis
      • Hepatitis C
      • Dengue
      • Pandemic preparedness
      • Antimicrobial resistance
    • Research & development
      • R&D portfolio & list of projects
      • Drug discovery
      • Translational research
      • Clinical trials
      • Registration & access
      • Treatments delivered
    • Advocacy
      • Open and collaborative R&D
      • Transparency of R&D costs
      • Pro-access policies and IP
      • Children’s health
      • Gender equity
      • Climate change
      • AI and new technologies
  • Networks & partners
    • Partnerships
      • Our partners
      • Partnering with us
    • Global networks
      • Chagas Platform
      • Dengue Alliance
      • HAT Platform
      • LEAP Platform
      • redeLEISH Network
    • DNDi worldwide
      • DNDi Switzerland
      • DNDi DRC
      • DNDi Eastern Africa
      • DNDi Japan
      • DNDi Latin America
      • DNDi North America
      • DNDi South Asia
      • DNDi South-East Asia
  • News & resources
    • News & stories
      • News
      • Stories
      • Statements
      • Viewpoints
      • Social media
      • eNews Newsletter
    • Press
      • Press releases
      • In the media
      • Podcasts, radio & TV
      • Media workshops
    • Resources
      • Scientific articles
      • Our publications
      • Videos
    • Events
  • About us
    • About
      • Who we are
      • How we work
      • Our strategy
      • Our donors
      • Annual reports
      • Our prizes and awards
      • Our story: 20 years of DNDi
    • Our people
      • Our leadership
      • Our governance
      • Contact us
    • Work with us
      • Working at DNDi
      • Job opportunities
      • Requests for proposal
  • Donate
Home > Stories

Pip Stewart on cutaneous leishmaniasis: ‘It wasn’t just the parasite that got under my skin, it was the injustice of it’

Home > Stories

Pip Stewart on cutaneous leishmaniasis: ‘It wasn’t just the parasite that got under my skin, it was the injustice of it’

Pip Stewart in the Amazon Jungle
29 Oct 2021

Pip Stewart is a British explorer and journalist who faced perhaps one of her biggest challenges during a trip to the Amazon jungle: a flesh-eating parasitic disease called cutaneous leishmaniasis. Since her infection and subsequent treatment, she has become a vocal advocate for patients affected by neglected tropical diseases (NTDs), giving passionate TED talks and media interviews on how this is a pressing issue of global health equity.

She has just published Life Lessons From The Amazon, a book on her reflections on life inspired by her journey from the rain forest in Guyana to a hospital bed in London – and generously donated half of her author’s fees to the Drugs for Neglected Diseases initiative (DNDi). She kindly agreed to answer our questions.

Life Lessons from The Amazon Book

Pip, in the final chapter of your book, you write: ‘Global inequality of healthcare is far more terrifying than anything we encountered in the jungle. It wasn’t just the parasite that got under my skin, it was the injustice of it.’ What did you know about NTDs before your trip to the Amazon?

I knew a little, the sort of things you need to know when you prepare for an expedition. But in terms of understanding the impact of NTDs, it hadn’t really registered. I did not appreciate the full nature of those diseases until I managed to pick one up myself.

This happened after I came back to the UK: I had this mark on my neck that looked like a bite and kept getting bigger. And crusty. I went to the Hospital of Tropical Diseases in London and they told me I had cutaneous leishmaniasis.

When Pip came back to the UK, she noticed a mark on her neck.

The doctors gave me two options: to not get it treated, which means the flesh-eating parasite might spread to my face and my nose. Or to have an outdated form of chemotherapy dating from the 1940s, and for which they would have to monitor my heart and liver functions and perform regular blood tests. ‘But that is the best treatment we have now,’ they said.

I had a bit of panic. But then, I realized how unbelievably privileged I was: I was being treated by world experts, quickly, and for free.

How was the treatment?

I was so grateful to get it but the treatment was toxic and horrible. I was back from a 3-month kayaking journey, I was in the best shape of my life, and suddenly, at the end of the 3-week treatment, I could barely move. I had to sleep on the floor because my body was in such pain. But again, as I explain in the book, I knew that I was so lucky to have this privilege of being treated.

Pip Stewart in the hospital
Pip getting treated at the hospital

My friend in Guyana, Fay, who lives in a very remote part of the jungle, texted me that she also had cutaneous leishmaniasis before. To treat it, she put burning cow fat onto her skin. That was the only treatment available to her. Because the nearest hospital where she could have gone was five to six weeks away from home and she did not want to leave her children.

The Wai Wai indigenous community, who guided us during our expedition, told me they use crushed turtle shell to treat the disease. While local treatments might be effective at curing the disease, there has been little research done into it. This is why, however brutal it was, I was happy to receive this treatment in London – I was told it has a good chance of success.

And that is also why it was so important to write about that experience, the lack of adapted treatments and the massive inequality in access to the existing cures.

‘Global inequality of healthcare is far more terrifying than anything we encountered in the jungle. It wasn’t just the parasite that got under my skin, it was the injustice of it. These are not problems of the poor, these are problems for humanity.’

Pip Stewart, Life Lessons From The Amazon

Why are you making so much noise about this?

Leishmaniasis is a scary thing to be diagnosed with, and when it happens you don’t necessarily have all the information that you would need – and this is true for other neglected diseases.

After I started talking about it on social media, I was amazed at the number of people who reached out to me to share their own experience or ask for advice. I realized that there are too many people who need information about the disease and who are as scared as I was.

The more we discuss it, the more we form communities around it, the more we highlight the work that organizations such as DNDi are doing, the better, really.

Pip gave a TED talk on her experience with cutaneous leishmaniasis

Readers of my book are reacting with shock. They are wondering: how is it happening that in the 21st century, the second biggest parasitic killer after malaria isn’t getting that much attention?

One of the strangest messages I got was from a doctor who told me: ‘don’t take this the wrong way, but I’m kind of glad this has happened to you, because you have access to media and you are trying to make a lot of noise about the issue.’

Do you have any advice on how we could get more visibility for NTDs and for neglecting patients?

This general lack of interest for NTDs is making me scratch my head. How are we not taking these diseases seriously? I think that, unfortunately, the global North is only going to pay any attention and dig into their pockets for some money when NTDs become a problem for them too.

Climate change, that is impacting the movement of insect populations that are carrying the diseases, or the fact that some NTDs are emerging in places like Spain, may mean that more people in the Global North will feel concerned in the future.

You recently had a child. Were you concerned that the drugs you were taking for leishmaniasis might affect your pregnancy?

Yes. Too few studies have been done on how these treatments might affect pregnancy, newborn babies, or breastfeeding. It turns out that most people being treated in the London hospital I went to were military males. It is a big issue. I was so worried that I even asked the doctor before getting the treatment: ‘do I have to freeze my eggs?’

That is why I am so supportive of the work done by DNDi and its partners. Because we definitely need more research to understand the impact of the diseases and the treatments on everybody, including children, women of childbearing age and pregnant women.

In your book, you suggest renaming the disease ‘William’ – from the first name of the doctor who discovered it – because leishmaniasis is too difficult to pronounce, which does not help to raise awareness about it. Any update on your rebranding efforts?

The WHO itself said that having hard-to-pronounce names may also contribute to why so many tropical diseases are neglected. But so far, my campaign to change leishmaniasis to William is not going so well I’m afraid (laugh).

Thanks a lot, Pip!

Pip Stewart, Life Lessons From The Amazon, Summersdale Publishers, 2021

Photo credit: Peiman Zekavat, Pip Stewart

Cutaneous leishmaniasis

Read, watch, share

Loading...
News
6 Jun 2025

DNDi is partnering with Médecins Sans Frontières South Asia for the Without Borders Media Fellowship 2025 

News
5 Jun 2025

Meet the DNDi Eastern Africa 2024-2025 Media Fellows

Press releases
5 Jun 2025

Colombia becomes first country to recommend rapid tests to diagnose Chagas disease

Statements
27 May 2025

DNDi interventions at the 78th World Health Assembly

Press releases
22 May 2025

Six African nations commit to eliminate deadly neglected disease visceral leishmaniasis

Videos
20 May 2025

The Children of the Sierra

Press releases
13 May 2025

First all-oral treatment for a rare but deadly strain of sleeping sickness now available and being used to treat patients in endemic countries in Africa

Statements
8 May 2025

DNDi’s briefing note for 78th World Health Assembly

VIEW ALL

Help neglected patients

To date, we have delivered thirteen new treatments, saving millions of lives.

Our goal is to deliver 25 new treatments in our first 25 years. You can help us get there. 

GIVE NOW
Linkedin-in Instagram Twitter Facebook-f Youtube
International non-profit developing safe, effective, and affordable treatments for the most neglected patients.

Learn more

  • Diseases
  • Neglected tropical diseases
  • R&D portfolio
  • Policy advocacy

Get in touch

  • Our offices
  • Contact us
  • Integrity Line

Support us

  • Donate
  • Subscribe to eNews

Work with us

  • Join research networks
  • Jobs
  • RFPs
  • Terms of Use   
  •   Acceptable Use Policy   
  •   Privacy Policy   
  •   Cookie Policy   
  •   Our policies   

  • Except for images, films and trademarks which are subject to DNDi’s Terms of Use, content on this site is licensed under a Creative Commons Attribution-NonCommercial-Share Alike 3.0 Switzerland License