Advisory Boards – Panel

Panel of women and men affected by leprosy, the Panel

A key enabling component of ILEP’s strategy for 2015 – 2018 is an advisory Panel of Women and Men Affected by Leprosy. This Panel will have a major influence on all our activities so we may give a voice to those most affected and impacted by leprosy.

Panel Members:

Paula Soares Brandão, Brazil

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Paula is a 36 year old Brazilian nurse living in Rio de Janeiro. Paula discovered she had Hansen’s disease during her last term at the Nursing University, at which point she had begun feeling some numbness on her upper thigh. After several months of inconclusive tests, Paula was diagnosed with indeterminate Hanseniase. Devastated, she was unable to leave her house or tell her family for days. But when she finally confronted them with the news, she received overwhelming support, and felt comforted by their presence.

Paula began multidrug therapy (MDT) treatment on 10th July 2002. She continued for about a month, during which she felt extremely lethargic, even after completing the most menial of tasks. Concerned, she consulted a physician who determined that she had developed Hemolytic Anemia. Paula was offered a job at the Health Centre, where she was able to work with a project called the Programme to Control Hanseniase and  take her doses of medication. While being treated at the Health Centre, she began talking with other patients about the disease and was able to provide them with some comfort. This lead her to become both a patient and a nurse in the Programme. Gradually, she became more comfortable telling her colleagues about her condition. Paula completed the treatment in December 2002.

The following year, she began working with the Family Health Programme, believing she had been cured of the disease. In 2006, Paula developed a reaction condition: an UIlnar Neuritis. This was a very difficult period to get though; Paula’s family members where experiencing their own health problems, and she had started a medication who’s side effects lowered her self-esteem immensely. Later that year, Paula was invited to discuss issues related to Hansen’s disease with the Health Ministry.

In 2009, Paula began her master’s degree, and continued to research Hansen’s disease for several years. In 2015, Paula began a teaching career at the Nursing University of Rio de Janeiro, where she ensures that all of her students are well-educated on Hansen’s disease.

“My life goes on, and I know that my mission is to support and care for people affected by Hanseniase.”

Mathias Duck, Paraguay

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Read Mathias’ blog

Mathias describes himself as a follower of Christ, husband, dad, chaplain, and person affected by leprosy and committed to fighting leprosy and its stigma. He is from Paraguay and his wife, Cynthia, a nurse, was born in the USA but has spent most of her life in Latin America. They have been married for over 10 years and have three children: Gabo, Nico and Alana.

Mathias was Pastor/Chaplain at Hospital Mennonita Km 81 until 2010, a reference hospital for leprosy in Paraguay. Mathias and his wife work with children, youth, seniors, men and women with disabilities in different churches and other organisations. He studied theology in Paraguay (BA) and in the USA (MDiv).

Click to listen to Mathias’ story told on YouTube here

In October 2010, Mathias was diagnosed with leprosy and completed MDT. In the last few years he has focused more on leprosy stigma and raising its awareness.  He is due to publish a book about leprosy, stigma and the Bible. The main goal of the book is to help Christians (Catholic and Protestant) to understand leprosy and its stigma and to overcome it. Mathias has organised several meetings of religious leaders and spoken in churches and different media about leprosy and its stigma.

Twitter @mathiasduck

Rachna Kumari, India

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Rachna is a full time employee at Lepra Society’s Munger Referral Centre in Bihar. She has an advanced diploma in Health Assistance and Nursing and she is studying for a BA in sociology. She is a member of the State Forum of leprosy affected people in Bihar. She lives with her parents and two children in Bihar. See video featuring Rachna’s work at the Referral Centre.

Rachna was married at 18 and had two children by 21. She was 24 when she became aware of leprosy when darks spots appeared on her face. Her husband and his family felt justified in forcing her out of her home. Although her parents came to the rescue it was thanks to Lepra that she received proper treatment for leprosy and started to recover. Lepra encouraged Rachna to become a community ambassador to inspire others affected by leprosy and has sponsored her further education.

Rachna’s life purpose is to help other people with leprosy. She does this every day with rare patience and compassion teaching people how to care for themselves through a set of practices. She is also a key member of the State Forum of leprosy affected people in Bihar through which she helps raise awareness in leprosy colonies and advocates for their rights to a life of dignity.

This group recently won the highest disability pension in the country for people with leprosy-related disabilities and are now fighting for land rights so that people with leprosy are not unfairly evicted.

In 2014, Rachna was cast in Al Jazeera’s documentary on leprosy called Ancient Enemy in their Lifelines series. She also appeared as a Lifelines Health Hero. Watch the video clip here.

Rachna was invited to China at a meeting organised by the World Health Organization where she represented people affected by leprosy in India. She was also short-listed for BOND’s 2014 Humanitarian Awards.

In Rachna’s words, “my dream is for India and the world to be free from leprosy. Every time I come across someone affected by leprosy the first thing I tell them is not to feel ashamed of their condition and hold their heads high. There is no need to have fear.”

Kofi Nyarko, Ghana

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“Born Jackson Jonathan Nyarko, I was given the nickname Kofi, which means ‘born on Friday’ in Twi, a language of Ghana.”

Kofi is Headmaster of St. Elizabeth’s Special School in Elimina, Ghana, which provides education for children with special needs. He is married to Lucy with three sons and one daughter.

Kofi was diagnosed with leprosy at the age 10, by which time he had irreversible physical effects of the disease. As a result of being rejected by his classmates, he decided that when he had completed his schooling, he would help other people in situations similar to his.

Kofi is a member of IDEA’s Board of Directors and for the past nine years he has also been Vice President, St. Joseph Catholic Church, KEEA District. He is the International Leprosy Association Council Member representing Africa.

Amar Timalsina, Nepal

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Amar was seriously affected by leprosy during the early years of his life. Due to the intense stigma surrounding the disease, he was neglected by the society in Kathmandu, Nepal. He was successfully treated for leprosy by the Anandaban Hospital from 1989 to 1995.  This lead to his immense willingness to work in the part of advocacy and lobbying for a safe rehabilitation of the people affected by leprosy in their own families and communities. Amar is now happily married with two children, and works as a school principal contributing to the development and progress of school education at the National level. In 2015, he was elected as IDEA Nepal’s President, a term that will last four years. Amar strives to exchange stories about the current consequences related to leprosy, sufferings of the people affected by leprosy, and to find a common ground to counter these consequences. His goal is to reach the decision-making level of policy in order to find ways to assist those who have been affected by leprosy.