Kate’s Purulia Diary Part Two; “Lavanya’s battle against leprosy had begun.”

In late 2016, Kate Gent visited Purulia Hospital in West Bengal to see how Leprosy Mission staff are dealing with a huge rise in patient numbers there. Here, she shares her story.

Lavanya sat staring at her hands – this said it all. Her battle against leprosy had begun.

We sat in the counselling room at Purulia Hospital, a shared space with no privacy. Another consultation was about to start and there were people queuing nearby.  I felt flustered for her.

Even the word leprosy is enough to fill people here in India with dread.  But I admired Lavanya’s courage in the face of adversity.

It took a huge amount of bravery for her to make the long journey back to the hospital to start her treatment and she was clearly feeling very anxious. I can see it in her eyes, her posture, as wrapped up in a cardigan and scarf, she clutches her hands together tightly.

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Examining Lavanya’s arm.

She’s experienced tingling and pain in her arm. There’s a risk this could be signs of nerve damage from leprosy. Without close monitoring this could develop into serious problems, such as immovable clawed hands.

The doctor presses her elbow to test the nerves; he says they have thickened. This isn’t good news.

He points out the pale skin patches, slightly faded but still numb. Leprosy must be so easy to misdiagnose without the skill and expertise of these doctors.

Lavanya’s lips tremble: she needs further tests.  In a tiny room, the physiotherapist examines her palms and soles of her feet. With her eyes closed, she points out where she feels sensation.

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In the physiotherapy room.

Leprosy has caused greater damage than she thought. Although her hands are still reasonably flexible, she will need continued monitoring of the nerves and physiotherapy.

She says she is okay, but then she puts her head in her hands. Tears begin to roll down her cheeks. Self consciously she looks at me and when she saw my eyes fill with tears too, gradually, she begins to open up.

When Lavanya first found the numb patches, she tried homeopathic remedies.  After three months she came to Purulia, having heard of the hospital’s reputation for skin and eye care, but her numbness was even worse by that point.

When she was diagnosed with leprosy she was really scared. Her husband seems supportive but he also tells her it’s a bad disease so she shouldn’t tell the neighbours about it.

She wouldn’t dare – she’s the only one with leprosy in the village. She will never tell her friends because she’s too afraid she will end up alone.

Her biggest concern is that her husband could turn against her. They have two little children; her youngest has just started walking and her son has just turned five.  If he were to throw her out, how could she manage alone?

My heart went out to Lavanya, and I prayed that God would help me to help her.  As our only shared language, she lent me a gentle, sad smile and wiped her tears with her scarf.

After I had followed her through her outpatient journey, we shared a few moments near the central courtyard.

A little girl came toddling over, her tiny arms outstretched. Lavanya bent down and scooped her up.  Her eyes lit up: her baby girl was there waiting for her.

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Lavanya and her daughter.

The road ahead is not going to be easy for this family. Although it’s fantastic that Lavanya’s got the cure and is in the hands of experts, there is still a lot for her to face. She will need Purulia Hospital more than ever, returning every month for her medicines, to learn physiotherapy exercises and to receive check-ups.

As our time together drew to a close, her little girl began rubbing her sleepy eyes, she turned her head and nestled into her mum, ready for their long journey back home – 60 miles from the hospital.

Even now I’m back in England, I think of Lavanya often. I’m so thankful that Purulia Hospital is uniquely placed in an area of India with high levels of leprosy.  But what weighs heavy on my heart is the strain this hospital is under.

There are so many more people who still need help and I would hate to see them turned away.  I owe it to Lavanya and her daughter to not let that happen. That’s why I resolved to tell as many people as I can about my visit to Purulia. The hospital needs a new Outpatients’ Department – and you can partner with The Leprosy Mission to make it happen. Find out how and give a gift today.

A rich story – Rebecca’s Nepal blog

Narb, who has endured great stigma as a result of being treated for leprosy.
Narb, who has endured great stigma as a result of being treated for leprosy.

Rebecca Pullon is part of our team of young people visiting Nepal. Read on to learn about her experiences at Anandaban Hospital.

What makes a story rich? Passion, determination, success amongst hardship? Or perhaps humility and hope? Whichever the case, Anandaban hospital in Nepal, is full of rich stories – men and women who have endured much to be healthy.

The hospital itself is a rich story, one that started in 1957 and to this day has prioritised and treated leprosy-affected people for free. It is one of three leprosy hospitals in Nepal and the only one to offer specialised reconstructive surgery. It has 80 beds for leprosy inpatients and runs outpatient clinics in three other locations once a month. Each day the staff gather at 8:30am for worship and prayer, and then begins another busy day of serving the people of Nepal.

This week I met Narb, and I want to share his story. Narb is 63 years old. He found out he had leprosy when he was just 14 years of age, and from the moment he took medicine for leprosy treatment, he was labelled as a leprosy-affected person by his community. He was never able to marry because of discrimination in his village – word of mouth spread very fast. Nonetheless he stayed in his home town to care for his mother.

She died last year so Narb has now moved to Kathmandu. and is staying at Anandaban for a few weeks to learn how to take care of himself – last month he developed ulcers on his feet. Narb has become a Christian since being treated at Anandaban hospital, he goes to a church for people with disabilities and is planning to get baptised soon.

Narb’s story is typical of the stories I’ve heard from the patients here; some of them have endured a great deal – the saddest to me is being prevented from getting married because of being affected by leprosy. Narb started crying as he shared his story with us.

Niwa soaks his feet at the self-care unit.
Niwa soaks his feet at the self-care unit.

We also met Niwa, who sat soaking his feet as he talked to us. He doesn’t have feeling in his feet and they don’t sweat so they get very dry and hard. He needs to soak his feet until the hard skin goes soft so he can scrape it off. Niwa found out he had leprosy five or six years ago and came to Anandaban for treatment. He was here for a year while he had surgery on both feet (for foot drop) and on his left hand, which had become clawed. He is from the eastern region of Nepal and has two sons and a daughter, but he lives in Kathmandu working as a carpenter, sending money back to his family.

Niwa has been back to Anandaban a couple of times after developing ulcers on his feet and is currently staying in the self-care unit to help encourage him to look after himself well. He is meant to soak his feet everyday but often doesn’t because it is seen as inappropriate by the people he lives with. Sometimes he doesn’t have time or doesn’t have an appropriate vessel to hold water. At Anandaban, staff are working hard to try to encourage people to incorporate self-care into everyday life.

I am moved by every story that I hear from the people of Anandaban. It is a privilege to hear their hearts and uncover their rich stories.

Photos: Ruth Jones

Ruth’s first day at Anandaban

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Ruth Jones, 21, is one of a group of young people taking part in a two-week volunteering trip to Anandaban Hospital, Nepal. Leaving the UK on 7 April, our volunteers are now getting stuck in to life at the hospital and learning more about our work.

I’m writing this blog post from my room in Anandaban Hospital’s Training Centre; it has the most beautiful view of the local village and hills out of my window, but I can also hear the sounds of the honking, clattering trucks as they drive along the rugged roads through the village.

Driving here is very different to the UK; I experienced this when I first arrived in Nepal on Tuesday. Even driving out of Kathmandu Airport’s car park was an experience of harsh braking and loud horns. The roads leading up to Anandaban are rugged, with steep drops at the roadside, with no barriers to protect the cars from falling – this only unnerved me when we were inches from the edge while overtaking wide trucks. Honestly, I did have complete trust in the driver – despite the chaotic road system. I have not yet seen any crashes, so there must be method in the madness!

Upon arrival at the Hospital we were greeted by some of the staff and then given Nepalese food for dinner, a welcome taste after the aeroplane meals I’d been munching on over the past 12 hours. We then went upstairs for the evening devotions – climbing the 365 steps that separate the Training Centre from the main hospital compound, as Anandaban sits neatly on a hill.

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Sleep quickly engulfed me after arriving back from the devotions, and the next morning I awoke to beautiful birdsong and the clatter and honking of trucks (not so beautiful!). After tucking into a tasty breakfast we got stuck into a day of touring the hospital, self care, and research facilities – which also involved climbing up and down the 365 stair path twice more, so I think my legs will be pure muscle when I get home! It was great to learn more about leprosy, meet some of the patients, see the facilities, and hear about how research into leprosy is developing at Anandaban.

The day came to an end with a walk into the local village – an amazing way to start our first full day in Nepal as it gave context to the lives of the leprosy patients before they entered the hospital, and the lives they will come back to when they are cured and leave Anandaban. It was also an amazing opportunity to meet some of the locals and the children especially enjoyed our visit.

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All photos: Ruth Jones