By Pip Stewart
I’d like to address the elephant in the room. I currently have a rather large mark on my neck that looks suspiciously like a love bite. I’d like it on record that this is medical not kinky.
In Feb-April 2018 I paddled, as part of a multinational team, down Guyana’s Essequibo River. It was a journey of a lifetime and a world first. However, as with the case with journeys they often to have the power to shape you long after they’ve finished. I realised this as I was lying with my neck, and a particularly flavoursome scabby sandfly bite, tilted under the bright light of a surgeon’s operating room in London’s Hospital for Tropical Diseases.
A few weeks later, the results from were in – I had leishmaniasis – or, to you and me, a flesh eating parasite. It wasn’t the news I was hoping for.
Leishmaniasis comes in different strains, the most severe, visceral leishmaniasis, is fatal if not treated within two years. It is the second biggest parasitic killer after malaria. Over 1 billion people in the world are at risk from some form of leishmaniasis. Thankfully (in a way), I had something called cutaneous leishmaniasis but there was a concern that it could spread to other parts of my body – including the nose and soft pallet, which would leave me deformed if so.
I was I was advised that I should undergo 21 days on an IV being pumped full of a rather toxic medicine that dates back decades to kill it. In the final week of treatment I felt like I’d aged about 50 years, I could barely move without aching and was getting regularly ECGs to check that my heart was still beating properly, blood tests to check my liver hadn’t packed up and a rather large IV was placed into my arm as the medicine can corrode veins. However, the grand scheme of things, I was lucky. I could be treated, for free, by the NHS.
This experience has taught me so much, I feel it is a journey I will be on for a while. This is what I’ve learnt so far.
- Words matter
I learnt during the biopsy of my scab that “scalpel” – this is not a word you particularly want to hear as it’s baring down on your neck. However, the incredible number of words of support I received on social media, be that personal or to help raise awareness, really lifted me on the days I most struggled. (On a side note, cake, flowers and words of support consistently from the Craghoppers team was unbelievable and made me so proud to be an ambassador for a company that genuinely cares about people). Social media is often bashed but I think, used well, it is one of the most powerful tools we have as a community. Words matter so choose them carefully.
- Access to healthcare is a privilege
We are so incredibly lucky to have free healthcare here in the UK. It’s amazing. My friends living in the jungle comparatively have problems with both access and financing such treatment. Inequality in this world is fundamentally wrong. I am all ears about how we fix this. I have also vowed never to complain about waiting times in the NHS ever again!
- In a globalised world perhaps we need to think about global solutions to global issues
I messaged my friend and teammate, Fay, in Guyana and asked if she’d ever had leishmaniasis. “Yes”, she replied, “I put burning cow fat on it to kill it. It felt like I’d been fried.”
It strikes me as shocking that in the 21st century treatment options are both so dated and aggressive. I’ve been in touch with some great organisations who are trying to raise awareness such as UCL’s Hospital for Tropical Diseases https://www.thehtd.org, Drugs for Neglected Diseases Institute, https://www.dndi.org/diseases-projects/leishmaniasis/ and the University of Glasgow’s Research Institute, https://www.gla.ac.uk/researchinstitutes/iii/wtcmp/publicengagement/podcastsandvideos/insidethewcmp/ The common theme I’m hearing from Drs and organisations is that more funding, research and visibility is needed to help support their efforts.
I took to social media to try and raise awareness of the issue and one Dr messaged me saying that: “In a funny way I am glad this has happened to you because leishmaniasis is considered to be the parasite of the poor”. Often, it’s those in remote areas, with limited access to healthcare, and media coverage, that are most at risk from the the parasite. That being said, you can also find it in Europe – so watch out next time you’re in Ibiza.
- When something gets under your skin act on it
I love travel as a way of connecting with myself, others and the world around me. Excuse the pun, but this issue has really got under my skin as I am shocked by how neglected this disease is on the global stage. Making noise about leishmaniasis has made me realise that even if I encourage just one person to be more aware around areas with sandflies then it’s been worth it. I am working on a project at the moment to try and help raise more awareness of the issue. Maybe seeing rubbish on our beaches or plastic in our rivers bothers you – whatever it is, try speaking up or doing something about it – you might shape someone’s thinking on the issue – or at least start a debate.
- The smallest things have the power to change the world
I had a plastic surgeon reach out to me recently saying that they could help reduce the severity of the scarring. However, bizarrely, my first thought was: “No, I like it.” An organic tattoo perhaps. I’m fond of it because whenever I catch it in the mirror it reminds me that the world is full of amazingly caring people and that genuine connection in the modern world has the power for good. It reminds me that even the smallest parasite has the power to affect change – and, if a parasite can shape the world, perhaps we can too. It’s not a love bite on my neck but, for me, it is a symbol of love and what can be achieved when we start from a place of compassion.
