My name is Jessica and I am the founder of Leishmaniasis Advocacy Network. I was infected with cutaneous Leishmaniasis, and I am here to tell you how a trip to the Mexican jungle led me to developing an advocacy network for patients around the world.
● How did you get infected by Leishmaniasis?
In 2022, I visited the Quintina Roo jungle in Mexico to begin writing my master’s thesis on animal to human relationships. I spent just over a month sleeping in a hammock on some land that my friend Paco had acquired to develop into a camp site. It was annoyingly buggy, but the feelings that came with waking up to monkey’s swing between the treetops above and watching the snakes slither through the long grass below me quickly eased me from the pain of itchy bug bites, one of which has lead me to sharing this very story about my experience with the parasitic disease, Leishmaniasis.
● When did you notice the first symptoms and how the doctors reacted to them?
I returned home after passing through Mexico City, landing in London in the autumn of 2022. Everything seemed normal, I went to work, handed in my thesis and moved to the U.S. However, overtime I began feeling unwell and began developing a small spot on my nose, prompting me to seek medical advice. In total, I sought the advice of 4 doctors who all told me the same thing; I was paranoid, anxious and that I should focus on my mental health.
Early Stages of Lesion
Around three months went by, it was May of 2023, and I was working on my overall health and wellbeing, but the lesion was getting worse. Desperate to find a dermatologist amongst long waitlists that would take me into the autumn of 2023 without an answer, I managed to find a last-minute appointment in Burlington, Vermont where I would get the answer that would change my life. After rounds of failed cryotherapy, and then a painful skin biopsy, I became the winner of ‘most interesting case of the month’ with my dermatologist Informing me that I had Leishmaniasis, an infectious parasite that is transmitted by the bite of a sandfly.
Progression of Leision by June 2023
● How did you react to the news?
Leishmaniasis was familiar to me as I had studied neglected tropical diseases, spending years working alongside Morocco Animal Aid, an animal rescue that frequently admits dogs with the parasitic disease. However, I had never considered that I might catch Leishmaniasis myself, after years of avoiding whilst being in regular and close contact. My first question was, ‘what kind?’ as Leishmaniasis has three forms, Visceral, Mucocutaneous and Cutaneous, decreasing in severity, respectively. The lesion indicated that it was most likely Cutaneous, but CDC testing could take months. Fortunately, I was assured by my doctor that the infectious disease specialists could take care of me.
● What motivated you to establish this advocacy network specifically for leishmaniasis?
In the month it took to be seen by infectious diseases, I spent hours on the internet trying to find people like me, information on wound care, and a community of support. Aside from the World Health Organisation and Drugs for Neglected Diseases (DNDi), there was no clearly visible platform that focused solely on the human impact of Leishmaniasis in a way that considered varying levels of health literacy and public education.
Overtime, I discovered the injustice that came with a Leishmaniasis diagnosis for many across the globe including expensive and global
Shortages of treatments, dangerous and even deadly chemotherapy treatments and the stigmatisation of people who developed significant ulcers and consequently, lifelong scarring. It felt important that I use my personal story and background in public health to advocate for those like me with Leishmaniasis diagnosis, as it felt like we had been forgotten about.
All whilst I was developing what is now known as Leishmaniasis Advocacy Network (LAN), the injustice of this disease crept further into my own reality. Quoted $11,000 for a treatment that had terrifying side effects whilst being unemployed and uninsured, I was forced to seek out clinical trials, quickly enrolling onto a National Institute of Health (NIH) program in Washington D.C.
By now, my nose had fully succumbed to the parasite, an itchy red ulcer took over my face. One man told me I looked like a nasty accident, kids would point and jolt up against their parents asking ‘ew why does her nose look like THAT?’, and finally, my favourite reaction was often people asking whether ‘the sunburn had got you [me] bad!’…I liked to tell people I had accidentally cut my bungee jumping cord slightly too short and had severely grazed my nose after jumping…before proceeding to educate them about the parasite, which would quickly turn them away.
● What are some of the biggest challenges you faced in dealing with leishmaniasis personally, and how did you overcome them?
My biggest struggle was how Leishmaniasis impacted my mental health and self-confidence. As a woman, I have delt with insecurities my whole life. Sometimes it feels like those worries never go away, and as the lesions progressed, I would cry, both from uncontrollable changes happening to my body and the general uncertainty of my diagnosis. I was also going through struggles in my personal life, having just moved to the U.S. and without a consistent support system from my family and friends, who were back in the UK. Most days I felt alone, like no-one could really understand me, who I was before this disease and what I was going through.
However, overtime I became empowered as I began to build LAN, which included bravely sharing disfigured photos and speaking up about what had happened to me. Gradually, I would introduce myself and my parasite in conversations, nicknaming it ‘Kevin’ to normalise my new appearance and unwanted friend. Many people spoke to the irony of me catching the neglected disease while researching Rabies, a completely different neglected tropical disease and my passion for this field of public health. It took some time, but I eventually realized that this was an opportunity to speak up for the millions of people suffering from this parasite around the world. I had a story to tell, and my scars have become a part of that, unifying me with others who have healed and have their stories to tell. I began to appreciate ‘wow, you’re handling this horrible situation so well, thank you for educating me!’, knowing I was beginning having a positive impact on the world around me.
● What are the main goals and objectives of your advocacy network?
Ultimately, I want those with a Leishmaniasis diagnosis to feel like they have a community of support. Leishmaniasis can be an incredibly isolating disease, so it is comforting to know that others facing this illness will have a place to find support, resources and a network of advocates raising awareness about this disease and its impact.
Focusing on leishmaniasis is essential due to its severe health impacts, including disfigurement, organ damage, and even death, and the cost of treatment can trap affected individuals and communities in cycles of poverty. Despite over a billion people at risk, leishmaniasis remains neglected, receiving little funding or attention. The disease strains healthcare systems in low-income regions, diverting resources from other needs.
Prioritizing leishmaniasis would not only reduce health costs but also strengthen communities against the spread of diseases, especially as climate change and displacement expand its reach. Addressing it is a step toward health equity and resilience for vulnerable populations.
While LAN is still in the early stages of development, it aspires to build toward the following areas of focus:
- Raise Global Awareness: LAN aims to bring leishmaniasis to the forefront of the global health agenda, highlighting its severe health, social, and economic impacts on affected communities and the connection to the climate crisis. This includes amplifying the voices of those affected, their communities, and local health providers.
- Advocate for Increased Funding and Policy Support: LAN is committed to securing greater funding and resources for partners in leishmaniasis treatment and prevention efforts. By engaging policymakers, donors, and global health bodies, LAN works to ensure that leishmaniasis is prioritised in NTD allocations and supported by sustainable, long-term initiatives.
- Empower Affected Communities and Facilitate Capacity Building: LAN hopes to focus on building coalitions with local health authorities, NGOs, and community leaders to empower those most affected by leishmaniasis. This will include awareness campaigns, community engagement initiatives, and knowledge sharing to support community-led solutions.
Highlight the Humanitarian Impact: LAN advocates for leishmaniasis as a priority within humanitarian response, particularly in conflict-affected or displaced populations. Addressing these intersections involves coordinated advocacy with humanitarian organisations, emphasising leishmaniasis as both a health and humanitarian concern.
● How can people get involved or support your advocacy network?
My ultimate goal is to slowly biteback against Leishmaniasis. The future that LAN can create is limitless, we can not only advocate for better responses to Leishmaniasis as a disease but also advocate for planetary health and health equity. Leishmaniasis is part of a wider One Health movement, and potential partnerships are everywhere as our globalised world adapts to increased disease transmissions due to the climate crisis.
To get involved, I welcome anyone from medical professionals, patients, veterinary professionals and even the general public to reach out to our email info@leishmaniasisadvocacynetwork.com and indicate in what capacity they would like to get involved or support the advocacy network. I am currently looking for board members in order to register LAN as a legal entity in the UK, so that is a time sensitive need that I welcome volunteers for.
I am grateful for the opportunity to tell my story to the CLIMOS project, who have been significant partners in LAN’s early development.
ABOUT CLIMOS CAMPAIGN
The CLIMOS project is an EU-funded project (No 101057690) that aims to assist the mitigation of climate change-induced emergence, transmission and spread of vector-borne and zoonotic pathogens.
To this end, we want to share human-centered stories focused on the struggles with sand fly-borne diseases, and the injustice that comes with a Leishmaniasis diagnosis for many across the globe including expensive and global shortages of vaccinations, dangerous and even deadly chemotherapy treatments and the stigmatisation of people who developed significant ulcers and consequently, lifelong scarring.
The campaign in collaboration with the Leishmaniasis Advocacy Network (LAN) will promote awareness of daily practices to help prevent sand fly exposure and emphasize the importance of preparedness and accurate diagnosis for health authorities. If you want to participate kindly do so by answering this survey
The stories will be published according to their order of submission. You will be asked your consent preferences around the use of your personal details in the campaign, but don’t worry, we can pseudonymise your responses. Pseudonymisation means all your personal information (name, location, etc) will be replaced by the researcher with fictionalised names, prior to publication, in order to protect your privacy. Nobody but the researchers will know your real identity.
