Despite Myanmar having the eighth highest number of people cured from leprosy in the world*, it is feared that these known cases are the tip of the iceberg with stigma and ignorance resulting in many cases being hidden or overlooked.

The Leprosy Mission is hugely grateful to Myanmar’s Nobel Laureate and State Counsellor, Aung San Suu Kyi, for giving the opening speech at the country’s first national conference on combating leprosy held in the capital Nay Pyi Taw last week.

Attended by government officials and representatives from NGOs, Aung San Suu Kyi told the conference that efforts to stop discrimination against people affected by leprosy and their families should be given top priority in order to combat the ancient disease in Myanmar.

She said having the right attitude towards people affected by leprosy was hugely important as discrimination led to new patients being reluctant to come forward for treatment.

James Pender, Programmes and Advocacy Officer for Asia at The Leprosy Mission England and Wales, which supports a number of programmes and 15 disability resource centres across Myanmar, said: “The fact that there were so many government officials in the room is wonderful as many would not be aware of full extent of leprosy in their own country.

“Also because of conflicts in the country not everyone has access to health services meaning many people would not be able to access the cure for leprosy. It is important for them to be aware of this.
“It really was an historic conference uncovering the stigma and ignorance surrounding the disease which is a positive step in our fight to rid Myanmar of leprosy and its devastating consequences.”

Designated Leprosy Champions for people affected by leprosy, Thidar Myint (pictured wearing yellow) and U Soe Win (pictured wearing headphones) talked to Aung San Suu Kyi after the event. 

Thidar Myint works for The Leprosy Mission as a job coach, helping people with disabilities into paid employment.

Thidar Myint knows all too well about the stigma surrounding leprosy in Nepal having been diagnosed with leprosy aged just 16.

She said: “When I went back to school with a doctor’s note after being diagnosed with leprosy they refused to let me back.

“Now I realise I need to stand up for myself and in my role as a job coach I want more people to come out and make a living standing on their own two feet.”

Leprosy-caused nerve damage led to Thidar Myint’s hands ‘clawing’ and earlier this year she was admitted to the Mawlamyine Christian Leprosy Hosptial, supported by The Leprosy Mission, for three weeks where she had reconstructive surgery to gain the use of her fingers once again.

Sixty-three-year-old U Soe Win has advocated for the rights of leprosy affected people for decades, having experienced first-hand many of the troubles they encounter.

U Soe Win first noticed signs of leprosy aged 30 by which time he was married with a daughter and running his own farming business.

He did not receive the proper treatment for leprosy and U Soe Win was often so ill he couldn’t work and saw his business deteriorate.

Despite his family standing by him, he attempted suicide three times he had plummeted to such depths of despair.

He finally received multidrug therapy, the cure for leprosy, in 1994 around the time when he moved area and started a small vegetable farm. Although physically he felt much better, he was deeply scarred by the effects of leprosy.

A painful memory for him was when his daughter was selected to represent Myanmar internationally for rowing and went overseas to compete.

U Soe Win was so happy and proud of her and wanted to go to the harbour with the crowds to see her off. But because his facial appearance gave him away as leprosy-affected, he was afraid he would bring shame on his daughter so didn’t go.

The self-stigma did not leave him but he worked hard and his vegetable farm was successful. Eventually a vegetable dealer who collected produce from U Soe Win’s farm persuaded him to go to market and sell his produce himself. He finally agreed and now goes to market every morning.

“I made a decision to communicate with people who accepted me and not worry too much about the others who did not want to treat me as a person,” he said.

“Now it is my role to encourage others suffering from leprosy to do the same.”

In August 2015 U Soe Win travelled to Japan to speak to attend the Asia Pacific Community Based Rehabilitation Congress, something he once never believed was possible.

*WHO global leprosy statistics for 2017

Photo: Ruth Towell/Leprosy Mission