‘Giving back to people with my disease living in desperate poverty has lifted me out of a pit of despair’

A UK charity trustee, psychologist and research professor has spoken of her battle with leprosy after being treated for the disease - twice. Leprosy remains heavily stigmatised and is largely consigned to the world’s poorest communities. It is a disease tied to fear, isolation and depression, with many patients experiencing suicidal thoughts after diagnosis.

Professor Zoica Bakirtzief is far from the typical leprosy patient. Yet she has faced many of the same struggles — suicidal thoughts, divorce and fighting to feed and house her family. She also recognises that her education and connections gave her a lifeline unavailable to most others with the disease.

Professor Zoica Bakirtzief is pictured with Dinesh Basnet, President of IDEA Nepal, a leprosy affected person’s organisation, and his mother.

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She explains: "It’s like the adage we heard during the Covid pandemic — we are all in the same storm but not in the same boat. We can all struggle with a disease, its effects and the isolation that comes with it. But people with stronger socioeconomic factors can protect themselves more and recover faster.”

Zoica’s second leprosy diagnosis came in 2018, followed by her second divorce. She says it left her at her lowest point.

"I found myself in a desperate way mentally. As far as I could see the only way out was not being in this world anymore. As a psychologist it is very hard to tell people you’re having suicidal thoughts. You’re supposed to have the answers!

“Desperate for advice, I turned to a friend of mine, a psychologist in India. She had gone through a hard time herself being widowed unexpectedly at a young age. She suggested a trauma course. It seemed strange to me but as I had no other ideas over how I might recover mentally I said, ‘oh ok then’ and went on an online course.

"It was on the course that they recognised that volunteering was a real therapy. So I started saying yes to everything and to use the experiences I had undergone to help others. My life is in a stark contrast to most leprosy patients I have met. But I have been through many of the same traumas."

Zoica, 64, has since moved from her native Brazil and is now based in Minnesota near to her daughter and grandchildren.

Today, alongside full-time work supporting people struggling with addiction, Zoica is a volunteer advocate and leader. She is a trustee of The Leprosy Mission Great Britain and Chair of IDEA, a global organisation for people affected by leprosy.

Zoica began working with leprosy patients as a young Masters student in 1990, supporting people affected by the disease and disability in São Paulo. Her work gave her a deep insight into the challenges faced by patients — and the creative solutions that can make a real difference.

"It is not until you hit hard times that you begin to use the skills you have acquired in your working life,” she said.

“When I was working with people affected by leprosy in São Paulo, I tried to help them with their economic needs. I helped them to apply for funds for microbusiness but when their business plans didn’t succeed it made their situation even worse. Not only did they have to manage more disappointment, but they were now in debt.

"The people I worked with in Brazil didn’t have schooling to prepare them for a job and were mostly illiterate. So I went looking for training for them. I felt out of my depth as I’m a psychologist and know nothing about business. But then I found a leadership development course designed for middle school students in the US to make them entrepreneurial. I had to go on the course to check it out and it was very dynamic with good teaching methods.

"I was able to adapt it for people without schooling and training. For example, there was a gentleman I was supporting who used to sell coffee and sandwiches to people queuing in line for the bank early in the morning. He had an ulcer on his foot because of leprosy and had to take care that it didn’t become infected. I helped him to streamline his process, only cycling to one place to protect his foot and selling a basic selection of food and keeping track of his stock. That way he knew what profit he could make.

"I felt really empowered by the training and it made me be an entrepreneur of my own skill set as a newly-divorced family after my first leprosy diagnosis in the mid-noughties. The NGO that I worked with closed its work in Brazil and I had a time where I found it difficult to get a job.

“Looking back, I was really struggling emotionally and a skilled interviewer would have been able to pick up on a person’s mindset and attitudes. But I needed to find a way to pay the bills and, by chance, someone connected me to a person who needed a series of books translated from English to Portuguese. So I ended up doing translation work for a while which paid for my daughter’s transport to school. It's amazing how no experience is ever wasted in life."

Zoica’s first leprosy diagnosis came in 2002. It shocked the community she worked in.

"Leprosy is a slow-growing bacteria so it had obviously been developing inside of me for some years,” she said.

“It was confusing though as I had always been taught to think of leprosy as a skin disease. But I had nerve pain and thought I needed to see an orthopaedic doctor. I was always aware that if I had any skin patches, I would seek leprosy treatment quickly to avoid disabilities. But I didn’t have any skin patches, just nerve pain.

“Eventually I went to the clinic where I had accompanied leprosy patients to but this time as a potential patient myself. I could see it dawn on the staff there that if I had leprosy because of my job then they can get it too. It was an old government building in Brazil, badly ventilated. It’s of no surprise that soon after my diagnosis they shut down the building and moved into a modern facility.

"My doctor was actually my neighbour, and I think she struggled hard that a person equal to them with the same schooling had leprosy. After all it was a disease that affects the poor and destitute, almost a different species of person.”

Zoica’s second diagnosis came after she noticed a loss of sensation in her foot.

She said: "It wasn’t until I had moved from San Paolo to a nice home with a garden in Rio Grande do Sul that I began to notice I kept losing my left flip flop in the garden. I realised I had less sensitivity in that foot so somehow couldn’t keep a grip on my flip flop. But I was living in an area of Brazil where leprosy had largely been eliminated so it was hard to find a doctor.

“Eventually I was doing a research project and needed a few leprosy patients to speak to. So I found a clinic, and it just happened that the infectious disease doctor was in that day. I asked to speak with her and mentioned my symptoms. It was then she realised that I wasn’t properly treated the last time. So I was diagnosed again but then there was a shortage of Multidrug therapy, the treatment. It was a month before I could get any. I saw the nurse open the window and gave me the news that I’d have to wait. But I was supposed to go back to my family!

"I was also a professor at a university and had colleagues and students that I saw every day. I can’t remember what happened to me while I waited for the treatment, but darkness befell me. I have interviewed many leprosy patients who said they wanted to kill themselves after the diagnosis and I totally got it.

"There were difficulties in my second marriage, and I was missing my daughter who was in the US. And my mum had recently passed away. All this took a toll and we separated.”

Reflecting back Zoica now sees her pain as an opportunity:

"It is an opportunity to help others and get out of my own struggles and focus on them,” she said.

“I have had many dark times, but I have also been equipped to cope with them more so than many leprosy patients around the globe. For example, in Brazil there is free healthcare, and I know the way around the system. I was helped with food parcels from the church when I got desperate and during times where I could not work, I was lent homes for my daughter and I to stay in. I even got a scholarship for children affected by leprosy to pay for my daughter to go to university.

“I had many people helping me and was not isolated like so many people affected by leprosy. I’m not even sure if or what stigma I came across as I didn’t really tell many people at the time. My sole focus was keeping a roof over our heads and feeding my daughter. Yet leprosy is a hard disease that takes so much from you. If I can ever use my experiences to help make life easier in any way for other people struggling with the disease, then I will always be happy to."