LIVING WITH LEPROSY IN A COUNTRY WHERE IT’S LONG BEEN FORGOTTEN – EVELYNE’S STORY

 

Blog - Evelyne Leandro
Evelyne Leandro was diagnosed with leprosy when she was living in Berlin, Germany.  Photo: Tom Bradley

Born and educated in Brazil, Evelyne Leandro moved to Germany to start a new life. She learned a new language, secured an exciting new job and made new friends. Then some patches appeared on her leg. Many examinations later, she was finally diagnosed in 2012. It was leprosy.

Read on to find out more about Evelyne’s journey in an interview with Katharine Jones.

Q. You were young, educated, with a new job, a new language, a new life ahead of you and then you were diagnosed with leprosy. How did that make you feel?

Even as an informed person, my first thought was that I was being punished for something I’d done wrong. It was the age-old image we have of the disease that concerned me. Of course, I hadn’t done anything wrong to deserve this, but I was already desperate. The idea of giving up everything I had conquered at that time was very painful. Starting a new life isn’t easy. In another country even worse. And ill? I had an idea what kind of future I would have and that was very scary.

Q. What did you family back home in Brazil think and how did that make you feel?

My family in Brazil, especially my mother, was very supportive. But the distance and the feeling of impotence were there, and I had to deal with my mother’s feelings too. She wanted to help, but didn’t know exactly how. She was in Brazil, I was in Germany. Bringing her to Berlin would be an additional issue for me, because I wanted this experience for her to be special. And I would need to be brave for both of us. I wasn’t strong enough for that. However our exchange during the whole process was very important for me. I could tell her my fears and she would listen to me.

Q. What was your husband’s reaction to your diagnosis and how did that make you feel?

At the first moment, he was as desperate as me because it was difficult to understand how this diagnosis could be possible, and what the next months or years would be like. But I believe, my husband was one of the pillars of my healing process. He supported me a lot and ensured me every day that I was loved no matter how I felt or looked like. That gave me a feeling of belonging. At least, I wasn’t alone.

Q. What was your employer’s reaction to your leprosy diagnosis?

My employer didn’t know about my diagnosis until I published my book. And at that moment, I wasn’t an employee anymore.

Q. Can you explain why the leprosy reactions upset you so much?

The many ups and downs during a long-term treatment are the most difficult part of it. One doesn’t ever have peace. When I needed time to concentrate on my healing I was surprised with a leprosy reaction. That meant a break on the treatment, more steroids and pain. With the pain and the other issues that a reaction brings, it’s difficult to focus on the most important thing: mental health.

Q. What was the one thing that upset you the most?

Not only were the reactions difficult for me. The side effects of the disease were the worse! It caused many other problems, such as depression, suicidal thoughts and weakness. I had to fight against the disease and the side-effects. It was a huge effort to maintain my sanity. A lot of therapy, and writing helped me with that.

Q. What was the worst moment and how did that make you feel?

The worst moment was, for me, was when the treatment ended and a couple of weeks later my body was reacting without the medicines. I thought, I had to start all over again and that would be the end for me. I couldn’t imagine going through all that again. I was feeling crazy until I went into therapy again, and with the support of my husband and doctor, I mastered the situation.

Q. What was the best moment and how did that make you feel?

The best moment was one year after the end of my treatment, sitting in a café in Berlin, I began to think of all the things I had lived, learned and overcome until that day. It was a relief. It was a magical moment for me. I was feeling free. I was proud of me. I made it!

To read more about Evelyne’s epic journey and how she conquered leprosy, please find her book here.

 

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Success for leprosy champion Sharidah as village gains a water pipeline

Sharidah is a leprosy champion for her community and has recently played an important role in securing a big change for their lives.
Sharidah is a leprosy champion for her community and has recently played an important role in securing a big change for their lives. Photo: Hassan Nezamian

Your gifts to the CREATE appeal are training people affected by leprosy to become ‘champions’ in their communities who can effectively challenge discrimination and fight for change. Read on to learn more about Sharidah, one of our first leprosy champions, already making a difference in her village.

60-year-old Sharidah lives in a leprosy community in Chhattisgarh state, close to The Leprosy Mission’s Champa Hospital. She’s been living there since she felt forced out of village where she grew up, when her husband rejected her because of her leprosy. Sharidah had been suffering the effects of the disease for some time, but it was when they became visible, with damage to her hands and feet, that he threw her out and kept her from seeing their children.

Thankfully now they’re grown up, her children ignore the negative attitudes surrounding leprosy and often come to visit, making sure Sharidah is part of her grandchildren’s lives. For some years now she’s been part of a self-help group that has enabled her to set up a small grocery store and earn a regular income, but sadly, the stigma of leprosy still remains. Sometimes people don’t want to shop there because of her disabled hands and feet, so her customers are mainly other people affected by leprosy.

Sharidah in her shop
Sharidah in her shop. Photo: Hassan Nezamian

When we first met Sharidah, we soon realised she had a real passion for creating change in her community. She was keen to improve life for other people affected by leprosy because, as she told us, she wants to ‘give something back’ when The Leprosy Mission has done so much to help her in the past.

Sharidah was excited to learn about the ways the CREATE project would be working in her local area. The aim of CREATE is to combat stigma and discrimination and improve life chances for people affected by leprosy. Part of this involves training up people to become ‘leprosy champions’ who can become advocates for those around them. It was clear from talking to Sharidah that she would be an ideal leprosy champion for the village – and she was more than happy to help.

When we visited the village again recently, it was amazing to see first-hand the difference Sharidah has been helping to make. Her enthusiasm to see change happen means that this year, the community will have a piped water supply for the first time.

Around nine years ago, a new water tower was built on the edge of the community. It was built to supply the whole of the surrounding area, but the leprosy village was not included in this, leaving residents without a pipeline. Sharidah’s self-help group wrote to different local government offices seeking answers but received no reply.

Eventually, they were promised that work on a connecting pipeline would soon start, but once the work had started it was soon put on hold. Sharidah – now trained as a leprosy champion – and her friends organised protests at the water tower and got in contact with authorities once more to explain why clean water is something everyone should have access to and why leprosy communities should not be forgotten about.

Before long, they saw success. Work on the pipeline started up again and Sharidah told us she was confident that it would be completed this time. If not, she already has plans for a new campaign! When finished, the pipeline will bring water to a communal tap in the village and eventually, will pipe water into individual homes.

Sharidah’s success in making change for people affected by leprosy shows just how much of a difference leprosy champions have the potential to make – and what can be achieved by people standing on behalf of their communities against discrimination. Thanks to you, many more people like Sharidah will be trained as leprosy champions – and many more lives will change as a result.

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Sharidah with CREATE project staff

 

Jutlen’s transformation

Some of the postcards you sent to Jutlen last summer
Some of the postcards you sent to Jutlen last summer

Helen Walton reflects on a very special reunion.

Do you remember Jutlen? Last summer, our appeal focused on Premananda Hospital in Kolkata, India, sharing his story. Jutlen was a 16-year-old boy alone in hospital, fearful for his future, in need of surgery on his hands and feet and deeply upset by the stigma he had suffered because of leprosy.

I, too, remember the day I met Jutlen, because it changed my life forever.

Jutlen, on the day I met him at Premananda Hospital in Kolkata.
Jutlen, on the day I met him at Premananda Hospital in Kolkata.

As I sat on Jutlen’s hospital bed, looking at the harrowed expression on his face as he told me his story, I saw such pain and hopelessness that it has haunted my heart ever since. I wept for this young man, for the injustice he has suffered and for his pain.

His parents had died and his best friend had refused to have anything to do with him once Jutlen told him he had leprosy. Although he was cured of the disease, he was alone, disabled and scared for his future. I left his bedside that day full of sadness for him and for his situation.

As part of last summer’s appeal, we asked you to send Jutlen and others like him your prayers and messages of support. It was wonderful to see the outpouring of love for this young man. Your good wishes for his future meant so much.

Returning to Kolkata recently, with a couple of hours to spare before my onward flight, I returned to Premananda Hospital. I was overwhelmed with curiosity as to Jutlen’s whereabouts. Where was he? How was he? As I was escorted to the men’s ward, I saw him. One of his legs was in plaster, indicating that he had recently had an operation – the reconstructive surgery he so badly needed to help him walk properly again.

Jutlen was completely transformed
Jutlen was completely transformed

What I hadn’t expected was the complete transformation that I saw. It wasn’t just the physical transformation – Jutlen’s smile was infectious; he was animated and excited to see me. Slowly he got off his bed, then knelt and touched my feet and knees, a gesture of thanks and gratitude.

Through the loving care he has received, all thanks to you, Jutlen has found hope again. In just a few short months his life has been turned around. He is healing from the effects of the rejection he felt and was looking forward to returning to education on leaving hospital.

It made my day to be able to spend time with Jutlen.
It made my day to be able to spend time with Jutlen.

When you supported Jutlen and others like him at Premananda Hospital, you helped turn a young man’s life around. Because of your kindness, Jutlen has found new hope. I’m so thankful that I got the chance to meet him again and see this for myself – and I couldn’t wait to share the news. As he rebuilds his life, please continue to remember Jutlen – as well as the other patients and staff at Premananda Hospital in your prayers.