“STOPPING FOR THE ONE: MY JOURNEY IN INDIA” PART TWO

Vicki Davison, Partnership Advisor, reflects on her recent visit to India.

About half way through the trip, we spent a morning at Salur Hospital, the only hospital in Andhra Pradesh State that provides specialist treatment for leprosy-affected people. As we arrived, we were greeted by the hospital superintendent who showed us round several wards and explained the services offered at the hospital. Salur treats approximately 25,000 patients a year; the treatment provided for general patients subsidises the cost of care for leprosy-affected people. Specialist reconstructive surgery, eye care, ulcer care and diagnostic tests are all available for leprosy patients.

We visited a few of the wards, stopping to pray with patients and listen to their stories. Having spent some time in the men’s ulcer care ward, we were told there was one patient who we had to meet; the staff led us along the corridor into the women’s ward and she was immediately obvious. A young woman of only 20-years-old, Sadhika sat cross-legged on her hospital bed. She was quick to greet me as I sat by her, but her beautiful smile did little to mask the large discoloured patches on her cheeks and deep sadness in her eyes.

Sadhika grew up in Andhra Pradesh with her parents and two older sisters, both of whom are married. From a poor family, she has never been to school and is illiterate. A few years ago, Sadhika developed discoloured patches on her face and arms. Then, when playing with her friends, she caught her foot against a rock. Although it was badly damaged, she didn’t feel a thing. Her family began to panic – they knew something was wrong but couldn’t understand what was happening to their daughter. They took her to Vizianagaram where she was diagnosed with leprosy.

Although her family remained supportive, Sadhika became consumed with guilt and self-hatred. She spent every day terrified that someone would find out she had leprosy. She knew that discrimination because of this disease could be extreme – that she could be abandoned by her community and forced to leave her family. What would she do without them? Unable to read or write, and living under the stigma of leprosy, how would she earn money to eat? Would she have to beg, or worse? And what would happen to her sisters if their in-laws found out? Ashamed to be associated with a family tainted by leprosy, would their husbands leave? Would she ever be anything but a burden to her family? What good was a life ruined by leprosy?

Over time, Sadhika lost all sense of self-worth and became suicidal. The burden of suffering with leprosy overshadowed everything else in her life – her hopes and dreams, even her love for her family. Sadhika struggled on until one day she could bear it no longer. She planned to walk to the local train line and throw herself onto the tracks.

Thankfully something stopped her.

And it wasn’t long before Sadhika was referred to Salur Hospital for specialist treatment and counselling. When I met her, Sadhika had undergone reconstructive surgery on both of her hands to correct the deformities caused by leprosy. Her right foot was carefully bandaged up to cover the ulcer that had formed from an infected cut – a consequence of nerve damage. Although Sadhika has lost all feeling in her feet and will have to practice self-care for the rest of her life, her hands are regaining strength with regular physiotherapy exercises.

More importantly, she has found healing through counselling at the hospital and is starting to dream again.

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Sadhika at Salur Hospital, India

Sadhika’s whole face lit up as she told me how she plans to learn tailoring at our Vocational Training Centre in Vizianagaram. Clothed in a vibrant pink shalwar kameez, I could imagine her sitting behind a sewing machine, chatting and laughing with the other girls, and I couldn’t wait for her training to start.

Sadhika will stay at Salur while her ulcers heal and her hands become stronger. Then she will go to live at the Vocational Training Centre, where she will learn to read and write, and take English and computer lessons.

It was a real privilege to meet Sadhika and hear how she is overcoming the stigma, shame and physical effects of leprosy.

And I’m so excited to see her take her next step and learn tailoring at the training centre – what a transformation that will be!

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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.

Jenny’s Nepal blog: fellowship and a clinic visit

Fellowship meeting for staff and patients
Fellowship meeting for staff and patients

Tuesday 18 November

Our second week is flying by but I can’t stop thinking about the strength of the women here. They have such hard lives, doing the manual labour in the fields, working on road repair, having children and in sole charge of their households. Add on the leprosy damage they suffer and you begin to see the strength of the survival spirit. It puts my everyday complaints and stresses into perspective.

A group of Nepalese women
A group of Nepalese women

Yesterday was a quieter day after the long journey into the hilly region to see the self help groups the day before. We had the enormous privilege of being in the operating theatre watching Dr Indra perform reconstructive surgery on a 59-year-old woman with badly damaged hands. It seems Dr Indra will always find a way of improving things if it is at all possible. This lady had very bent and damaged fingers but he saw potential in her left thumb. In the space of one and a half hours, he had performed a tendon transfer which made it possible for the thumb to move towards the fingers so she could hold something or pick something up. You try picking anything up without using your thumb!

Throughout the operation there was a quiet and respectful calm shown to the patient who at times was showing a little concern (she had had a nerve block rather than a general anaesthetic so was awake though mildly sedated throughout). Patients are treated with a love and respect that is an incredible example.

Later in the evening we attended the staff and patient fellowship meeting. The room was crowded with not only the staff but also were many patients who I recognised, all either with a strong faith, or others obviously exploring theirs. We had a wonderful time singing songs accompanied by the tabla, a Nepalese drum. Four of our group shared about their faith, and then back to the house by bus. There are leopards around so it was suggested that would be safer rather than a walk back through the wooded area! My husband Peter, after we had been told what to do if we were confronted by a leopard, suggested that rather than holding both arms up and shouting loudly, he would hold up one arm and take a picture with the other. We thought that might be the last picture he took!

Patient at Patan Clinic
Patient at Patan Clinic

Wednesday 19 November

Today we visited the leprosy clinic at Patan Hospital which is a government hospital that welcomes The Leprosy Mission every Wednesday to hold a day’s clinic there . The aim of the clinic is not only to pick up any new cases of leprosy which need diagnosing but also to give ongoing care to those already affected by leprosy. People also attend with general skin complaints.

The Mission works with a quiet but powerful efficiency such that a new case can move from the registration desk, to the diagnosing doctors, the smear test and biopsy section, the ulcer clinic, blood tests,and then to the physio area for sensory and muscle testing. All done in one day.

Everyone who turns up (there is no official appointment system) will be seen. No one is ever turned away. A humbling experience to be part of. I don’t think I will ever forget the people I have met here, both medical staff and patients. And a small amount of money can go such a long way here. Please keep giving and supporting TLM’s work – this is only one of so many centres across the world.

The lady in the painting was admitted to Anandaban, as so many are, for care to her ulcerated foot . She needs treatment, drug therapy and rest, all of which she will receive at no cost to herself.