Jessica Robbins is the founder of the Leishmaniasis Advocacy Network (LAN) and works as a Project Assistant at Uniting to Combat Neglected Tropical Diseases (Uniting). In this interview with the Drugs for Neglected Diseases initiative (DNDi), Jessica shares her journey with cutaneous leishmaniasis, from diagnosis to recovery, and how it shaped her commitment to advocacy.

How did you contract cutaneous leishmaniasis?

In September 2022, I traveled to Mexico to conduct research for my master’s thesis on animal-human relationships. I stayed at a friend’s property and slept outside in a hammock. I was bitten several times by insects but assumed they were mosquito bites.

A few months later, I noticed two small spots on my arm. At first, I didn’t think much of them. But about two months after that, another lesion appeared on my nose—then another on my ear a few weeks later. Over time, the spots grew larger and harder to ignore, and I started to realize something wasn’t right.

At what point was it concerning enough for you to seek medical advice?

It took me three months before I saw a doctor, but I wasn’t diagnosed until May 2023.

By then, I had moved to the United States. Over five months, I visited four different doctors, all of whom dismissed my concerns and told me my symptoms were due to anxiety or mental health issues. Eventually, I sought out a dermatologist, which was difficult because of the six-month waiting list. I managed to get a last-minute appointment and underwent several rounds of cryotherapy for what they thought was keratosis, but it didn’t work.

Finally, I had a biopsy done on the lesion on my nose by a dermatologist, and on confirmation of my diagnosis, was referred to the Tropical Disease Department at the University of Vermont Medical Center. The results confirmed I had cutaneous leishmaniasis.

What were some of the challenges or frustrations you encountered while trying to get the diagnosis?

Navigating the healthcare system in America was incredibly challenging. Accessing the right treatment was even harder. Even after visiting several well-known institutions, I couldn’t get a test to determine the parasite species. While searching for a hospital that understood cutaneous leishmaniasis, I was shocked by the amount of misinformation online. In one Facebook group, I was told my lesions would never heal.

My doctors initially suggested amphotericin B, which I now know would have been far too severe for the Leishmania mexicana species I had. I was also told treatment could cost between USD 11,000 and 52,000, which was completely unaffordable for me.

‘I felt trapped between two painful options: either live with medical debt or hope it would heal on its own. Both left me feeling helpless and took a toll on my mental health.’

Can you describe your treatment experience? What was the most challenging part?

After testing positive in May 2023, I faced constant worry about how I could ever afford treatment. Even though I desperately wanted to get better, the costs were completely out of reach. Then, I was incredibly fortunate to hear about a clinical trial at the National Institutes of Health (NIH). They flew me to Washington, D.C. in September to start treatment. They covered all my treatment costs, which saved me from falling into medical debt.

Because I was consistent with my medication, they allowed me to continue treatment from home, with follow-ups in Washington every three months. I was prescribed ketoconazole, which came with severe side effects.

‘The drug affected my muscles, and many nights I woke up in intense pain, sometimes screaming. One week, I couldn’t move my legs at all.’

I also had to get weekly liver tests, though thankfully no major issues were found.

When the lesion on my nose finally began to heal, I felt some relief. I was finally discharged in August 2024, nearly two years after the first signs showed.

What were the emotional and social challenges you faced after your diagnosis?

The emotional toll was immense. Dealing with changes to my appearance and the stigma around them was one of the hardest parts.

How did you find the strength to keep going on the hardest days?

My support system was essential. My doctor at the NIH was incredible. His passion for neglected tropical diseases and his unwavering support inspired me to create the Leishmaniasis Advocacy Network (LAN).

Through LAN, others affected by cutaneous leishmaniasis can share their stories and push for greater awareness. I also had friends who stood by me throughout my treatment, which gave me strength.

Based on your experience, what are the most important things for someone newly diagnosed with cutaneous leishmaniasis to know?

If I could give advice to someone newly diagnosed with cutaneous leishmaniasis, I would tell them don’t rely on social media forums for medical advice; they are often filled with misinformation that can increase anxiety. Instead, seek out professional medical guidance and, if possible, connect with supportive communities. Therapy can also be invaluable for coping with stigma and the mental health challenges that come with cutaneous leishmaniasis.

What is your opinion on leishmaniasis diagnosis and treatment – what more do you think can be done to improve this?

Raising awareness and centering patient knowledge are crucial. Doctors and public health professionals need to listen to patients and take their concerns seriously. I was misdiagnosed multiple times before receiving the correct diagnosis. I would also advocate for the inclusion of mental health services in leishmaniasis treatment, providing early intervention for the psychological impact of the disease on social well-being.

‘Whilst advancements are being made, treatment needs to be more affordable and accessible.’

Delayed treatment for skin lesions can worsen the condition and increase the risk of permanent scarring.