My visit to LEPRA India - November 2002
by Penny Murch.

There can be no better introduction to India than the welcome Beryl and I had from LEPRA India when we went to see the work being done at the Koralep project in Orissa. They opened their hearts to us in their pleasure and pride in their achievements.

LEPRA Headquarters in Jeypore with some of the staff from the Koralep project after a presentation of their work to us.

The staff at the Koralep physiotherapy and foot care unit demonstrate a hand adaption designed to help someone hold a spoon.

This part of India has 1.6 million people, half of whom are tribal and widely scattered in small rural villages reached in many instances by pathways only. The project is ten years old and in this time over 15 thousand leprosy patients have been cured, so that the number of patients has dropped to 4 in 10,000 of the population.

On our first evening we were treated to tribal dancing at Panaspot Bagarh village. Left - The band, the young lad is playing a drum. Right - Penny joins in the dancing with the ladies.

Finding patients in this terrain has not been easy. Old attitudes prevailed so that people were reluctant to come forward. But by careful explanation and demonstration; not only were sufferers brought under treatment, but their family and community were persuaded to accept and care for them again . So successful has been this programme that today one third of the patients bring themselves for treatment voluntarily.

This lady lives at a leprosy colony on the edge of Koraput. It has had its original name Ghandi Nagar restored and all its inhabitants have been cured and rehabilitated. Although severely disabled she was so happy dressed in her best sari. She is holding flowers they gave me when we arrived.

Sadly the fear of stigma can still prevail so the education work must go on. In the physiotherapy ward a sturdy young man had damaged hands from up to two years of untreated leprosy. He had been a typist in the post office.

‘Why did you leave your leprosy?’ I asked him.

He made no answer.

‘You can read,’ I persisted ‘why did you not get help?’ He mumbled something about ‘not realising.’

‘Now tell the truth’ came Dr Suma’s voice from behind me, ‘You were afraid that you would lose your job.’

‘Yes’ was the quiet reply, and my mind filled with all the regrets he must have had.

Dr Suma comes from the Koraput area, and pays a visit to the village where he grew up on the back of his son’s motor bike. He remembers as a child cuddling up to a cow for warmth on a cold night. He is over 60 but retirement is not in his plan. ‘While I can still be useful I will continue to help my people’ he told us, ‘There is so much to do,’ and wherever we went, people approached him with their problems. Up with their shirt and out with their tongue.

At Ambaguda while we danced Dr Suma was quietly at work.

This caring approach was evident everywhere. We saw clinics where patients and their families were taught how to care for hands and feet by removing hard skin and oiling the dry skin that cannot sweat. They were shown how to stretch contracted muscles, and exercise weak ones in order to preserve movement.

	Many people have to walk several miles and this takes its toll on damaged feet, sometimes causing ulcers that can get deep with neglect. In Koraput we saw the sandal workshop where special sandals with soft upper soles have individually fitted support pads to relieve damage on pressure points.
Rehabiliation and self-care are extremely important for patients with nerve damage. Above are two patients who attended Kusumi Self Care Service camp. The man on the right does hand exercises to strengthen muscles, the other is being measured for a pair of protective sandals.

For some patients their old occupation may be impossible even after treatment. For them LEPRA supervises a government loan that allows them to start a small business such as the man we saw in Jeypore who traded in cooking pots. He goes to villages and markets selling new ones and recycling worn out ones. Humble though his occupation is, he need not beg; he is self-sufficient and can support his family. He has his pride back.

Leprosy/TB/AIDS awareness stand in Kumuliput market. When we arrived it was crowded with people looking, talking to staff and picking up information leaflets.	As you can imagine, the infrastructure in the area is well established. LEPRA India is using this to press forward into new fields as the incidence of leprosy reduces and the stigma is overcome. A screening programme for TB is now underway with laboratory facilities at the project headquarters in Jeypore.
This photograph shows the same information stand now empty with picture boards that tell a story for those who cannot read.	Their mobile unit travels the markets and villages, and now carries a joint awareness message covering TB and AIDS as well. In an area where the literacy rate is as low as 20%, and many young and vulnerable people leave their villages to find work this warning about AIDS is invaluable in preparing them for the dangers ahead.

Nationwide in India the approach to leprosy is changing. Now, instead of being considered an isolated problem, leprosy is to be integrated into the Government health service.

Beryl & Penny with a group of children at Ambaguda village. After our visit to see rehabilitation work we all had an impromptu dance as darkness fell.

The Koralep staff are playing their part in the planning and training involved in the hand over. They will continue to provide support to leprosy problems and have already begun work on the new challenges. Beryl and I can only say ‘thank you’ for an inspiring visit.

If reading this account has wetted your appetite and you want to find out more about our next Supporter Trip , please contact Sarah Green on 08451 21 21 21 or Email her at Sarah_Green@lepra.org.uk.