Santosh Rath is Visiting Professor at the Institute for Global Health Innovations, Imperial College, London. A chance meeting with our team at the 2017 London Marathon brought him back into contact with us.

How did you come to be involved with our organisation?

I chose reconstructive hand surgery early on in my training at the All India Institute of Medical Sciences. Whilst training I was awarded a Fellowship from the Indian Council for Medical Research to pursue training and research in reconstructive surgery, with a special focus on leprosy deformity reconstruction.

I was introduced to Lepra in 1990 during advanced training in microsurgery in London, where I also pursued my research interest in leprosy nerve damage. My link with Lepra continued when I returned to Odisha, India in 1991. In the early 1990s Lepra led a successful leprosy elimination programme in Odisha. A large number of people were treated and cured, but many were still left with significant disabilities that required surgical care. This was not possible in Odisha and selected patients were sent 800km away for treatment. This led to Lepra establishing a surgical centre in Muniguda, about 200 km from Bhubaneshwar in Odisha where I lived and worked. I offered to help with surgery at the centre and traveled to and from Muniguda between 1994 – 2006.

How does reconstructive surgery help to beat leprosy?

Surgery has a very high impact. It can restore the function of hands and limbs which enables social integration.
Although leprosy can be cured with drugs, this is never accepted in society if there is still disability. A persistent disability after drug therapy is still considered in the community as an active disease. This is a major barrier to persuading communities to accept leprosy drug treatment and in overcoming social stigma.

How does reconstructive surgery directly help those living with disabilities caused by leprosy?

Surgery prevents disabilities from getting worse and ultimately prevents the possibility of amputations or blindness. The benefit of surgery is immense as it restores dignity and self- confidence, and enables integration into society.

Do you think this is contributing to reducing the stigma of the disease?

One of the tragedies of leprosy is the visual impact of disabilities, amputations or blindness. These can be prevented by early surgery that avoids permanent disfigurement.

What changes have you seen over time in treating leprosy-related disability with surgery?

The changes have been amazing. It took a while for people to accept surgery but once they could see the benefits of good quality care the tide turned. One of the most memorable occasions for me was a lady who was brought in for surgery by her mother-in-law. This was a landmark social change. Married women are mostly thrown out of their homes when they develop visible symptoms of leprosy. This is the reason why symptoms are hidden in the community.

Another lady was thrown out of her home and barred from seeing her children. We operated several times and she worked hard to achieve excellent results, but ultimately we could do nothing about her missing toes. She kept returning to demand further surgery to restore her missing parts so that she could return to her children. It caused me many sleepless nights pondering the value of surgery when I could not restore what she desperately needed. And the loss of her toes could so easily have been avoided.

What can be done to improve the impact of surgery?

Early detection of nerve damage can prevent disabilities and timely surgery can prevent them from worsening. We should be aiming to provide surgery within a year of completing the multi-drug therapy.

What needs to be improved in order to eliminate leprosy?

That’s a big question. The first step is to acknowledge policy gaps and past mistakes of stopping early case detection together with continuing care and the need for life-long disability care.

Read more about how we change lives with reconstructive surgery