www.lepra.org.uk
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LepraNews Winter 2014
Leading the way for 90 years In this issue Our new project in Bangladesh Our 90-year history
Patron: Her Majesty the Queen
www.lepra.org.uk
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LepraNews
Winter 2014
Lord Dholakia PC OBE DL, Deputy Leader, Liberal Democrats House of Lords
Congratulations to Lepra on its 90th anniversary. As a member of the AllA mother smiles Party Parliamentary Group on with her child in Odisha, India Bangladesh, I am aware of the disease, poverty and prejudice which exist there. Lepra was the first leprosy prevention organisation in the world and is still leading the way in its focus on neglected diseases in South Asia.
In this issue Messages from Sir Ronald De Witt KB, chairman of Lepra and Stuart Miles
3
Lepra’s contribution to the fight against leprosy
4
Our new project in Bangladesh
6
Leading the way for 90 years
7
Challenge events
11
A key milestone: our groundbreaking research in Malawi 12 Dr K V Desikan
14
Lepra’s supporters
16
Irene Allen, Lepra’s archivist has written three articles to celebrate our 90-year history in this special edition. Print and Design Colchester Print Group/Barber Jackson
A fond farewell It is with sadness that we mark the departure of Dr Ranganadha Rao after more than 24 years with Lepra in India, the last 10 as chief executive. Dr Rao has worked tirelessly for people affected by leprosy, a role we know he will continue in his new position in the World Health Organization Global Leprosy Programme.
Our front cover features Aadil. Find out more about him and his family on our website: www.lepra.org.uk Keep up to date on Facebook LEPRAHealthinAction and Twitter @Lepra_HinA.
www.lepra.org.uk
3 I am so glad in Lepra’s 90th year things are going from strength to strength and that the Blue Peter Health and Research Centre in Hyderabad continues to play such an important part in your work in India, carrying out laboratory and field-based research and contributing to increased knowledge on disease.
Dear friends and supporters As chairman of the trustees, I am delighted to introduce this important issue of Lepra News, marking the start of our 90th anniversary year. Birthdays are a time for reflection: for noting the remarkable things we have achieved together and for looking forward. Stories written here indicate our experience in the fields of healthcare and international development. We have changed the lives of people across the world. From breakthroughs in prevention of leprosy to pioneering models of work which are recognised by the World Health Organization, governments, respected health professionals and non-governmental organisations. It’s impossible to say how many we have helped over the 90 years but last year alone we changed the lives of more than 400,000 people and reached a further 900,000 with health education.
Sir Ronald De Witt KB, Chairman of trustees
Blue Peter viewers were so moved by the stories they were told of children like Adriana and Faustino with leprosy in Brazil and were shocked by the poverty they witnessed in India and Bangladesh which contributed to disease. Personally I was surprised to discover that prejudice about leprosy still existed in some communities, through no fault of their own necessarily, but purely due to a lack of education. With Lepra’s expert eye we were able to demonstrate that individual medication and universal education could have such a huge impact on people’s lives and with our viewers’ help we could really support the outstanding contribution that Lepra makes.
Leprosy is not eliminated. It still occurs in places where we work and elsewhere. India, for example, accounts for over half the world’s new leprosy cases. Our frontline approach and expertise also enables our work with people with other neglected diseases such as elephantiasis and visceral leishmaniasis as well as those with TB and malaria. Elephantiasis is now the second biggest cause of disability worldwide, so there is much to be done. Global economic development offers the promise of improving many lives, yet these diseases are still prevalent among the world’s poorest populations. Laws still discriminate against people with the diseases, who often have limited access to their rights.
As ever, Blue Peter viewers were quick to fundraise with Bring and Buy sales held across the UK which helped raise a staggering £2.75 million!
Challenge and opportunity lie ahead. We are in the unique position of combining scientific skills and state-of-the-art research facilities with close contact and relationships with communities affected by the diseases under study. Continued investment in research is essential, aiming for new methods of early detection of infection and to combat drug resistance. We remain committed to working directly with people affected by leprosy and other neglected diseases, providing health education, managing disability and advocating with them to help them build their own futures and live with dignity.
Being involved with Lepra and helping contribute to this appeal was something that was so hugely worthwhile and memorable and I hope that your incredible work continues to change lives for many years.
I look back with pride at the influential people who had the faith to promote our cause and to get behind it as well as those who have provided leadership and our experts and scientists who have made such great strides in healthcare. All this is made possible by our supporters who continue to be there, with confidence that we spend their donations wisely and with purpose. We will work with renewed vigour to improve the lives of some of the world’s most disadvantaged people. Stuart Miles Blue Peter presenter 1994 - 1999
2
LepraNews
Winter 2014
Lord Dholakia PC OBE DL, Deputy Leader, Liberal Democrats House of Lords
Congratulations to Lepra on its 90th anniversary. As a member of the AllA mother smiles Party Parliamentary Group on with her child in Odisha, India Bangladesh, I am aware of the disease, poverty and prejudice which exist there. Lepra was the first leprosy prevention organisation in the world and is still leading the way in its focus on neglected diseases in South Asia.
In this issue Messages from Sir Ronald De Witt KB, chairman of Lepra and Stuart Miles
3
Lepra’s contribution to the fight against leprosy
4
Our new project in Bangladesh
6
Leading the way for 90 years
7
Challenge events
11
A key milestone: our groundbreaking research in Malawi 12 Dr K V Desikan
14
Lepra’s supporters
16
Irene Allen, Lepra’s archivist has written three articles to celebrate our 90-year history in this special edition. Print and Design Colchester Print Group/Barber Jackson
A fond farewell It is with sadness that we mark the departure of Dr Ranganadha Rao after more than 24 years with Lepra in India, the last 10 as chief executive. Dr Rao has worked tirelessly for people affected by leprosy, a role we know he will continue in his new position in the World Health Organization Global Leprosy Programme.
Our front cover features Aadil. Find out more about him and his family on our website: www.lepra.org.uk Keep up to date on Facebook LEPRAHealthinAction and Twitter @Lepra_HinA.
www.lepra.org.uk
3 I am so glad in Lepra’s 90th year things are going from strength to strength and that the Blue Peter Health and Research Centre in Hyderabad continues to play such an important part in your work in India, carrying out laboratory and field-based research and contributing to increased knowledge on disease.
Dear friends and supporters As chairman of the trustees, I am delighted to introduce this important issue of Lepra News, marking the start of our 90th anniversary year. Birthdays are a time for reflection: for noting the remarkable things we have achieved together and for looking forward. Stories written here indicate our experience in the fields of healthcare and international development. We have changed the lives of people across the world. From breakthroughs in prevention of leprosy to pioneering models of work which are recognised by the World Health Organization, governments, respected health professionals and non-governmental organisations. It’s impossible to say how many we have helped over the 90 years but last year alone we changed the lives of more than 400,000 people and reached a further 900,000 with health education.
Sir Ronald De Witt KB, Chairman of trustees
Blue Peter viewers were so moved by the stories they were told of children like Adriana and Faustino with leprosy in Brazil and were shocked by the poverty they witnessed in India and Bangladesh which contributed to disease. Personally I was surprised to discover that prejudice about leprosy still existed in some communities, through no fault of their own necessarily, but purely due to a lack of education. With Lepra’s expert eye we were able to demonstrate that individual medication and universal education could have such a huge impact on people’s lives and with our viewers’ help we could really support the outstanding contribution that Lepra makes.
Leprosy is not eliminated. It still occurs in places where we work and elsewhere. India, for example, accounts for over half the world’s new leprosy cases. Our frontline approach and expertise also enables our work with people with other neglected diseases such as elephantiasis and visceral leishmaniasis as well as those with TB and malaria. Elephantiasis is now the second biggest cause of disability worldwide, so there is much to be done. Global economic development offers the promise of improving many lives, yet these diseases are still prevalent among the world’s poorest populations. Laws still discriminate against people with the diseases, who often have limited access to their rights.
As ever, Blue Peter viewers were quick to fundraise with Bring and Buy sales held across the UK which helped raise a staggering £2.75 million!
Challenge and opportunity lie ahead. We are in the unique position of combining scientific skills and state-of-the-art research facilities with close contact and relationships with communities affected by the diseases under study. Continued investment in research is essential, aiming for new methods of early detection of infection and to combat drug resistance. We remain committed to working directly with people affected by leprosy and other neglected diseases, providing health education, managing disability and advocating with them to help them build their own futures and live with dignity.
Being involved with Lepra and helping contribute to this appeal was something that was so hugely worthwhile and memorable and I hope that your incredible work continues to change lives for many years.
I look back with pride at the influential people who had the faith to promote our cause and to get behind it as well as those who have provided leadership and our experts and scientists who have made such great strides in healthcare. All this is made possible by our supporters who continue to be there, with confidence that we spend their donations wisely and with purpose. We will work with renewed vigour to improve the lives of some of the world’s most disadvantaged people. Stuart Miles Blue Peter presenter 1994 - 1999
4
LepraNews
Winter 2014
www.lepra.org.uk
5
In 1927 a new preparation of Chaulmoogra oil was sent by BELRA to all parts of the Empire, both to government medical officers and missionaries. Dr Ernest Muir later found a less painful way of giving the oil based on Sir Leonard’s idea. This was later marketed as ‘Alepol.’
Dr Krishnamurthy continues Lepra’s work in Hyderabad
Lepra’s contribution to the fight against leprosy Founded in 1924, the British Empire Leprosy Relief Association (BELRA) was set up “... to rid the Empire of leprosy.” As there was no cure for leprosy then, BELRA set about finding one using the folk treatment of Chaulmoogra oil. BELRA’s founder, Sir Leonard Rogers, an eminent doctor in the Indian Medical Service, turned the oil into a ‘soap’ which could be injected thereby avoiding the nausea which taking the oil orally induced. Although this treatment was painful, it gave patients hope, for the first time, that leprosy could be cured.
To inform those working in the field, BELRA produced Leprosy Notes in 1928 – a pamphlet which later became the more scientific Leprosy Review. In 1931 BELRA was recognised as the first ‘leprosy prevention organisation’ at an International Congress in Manila.
in Uzuakoli, Nigeria, took this up and for the next year intensive work was done refining the process. Dr John Lowe took over from Dr Frank Davey at Uzuakoli in 1947 to work on a whole range of new drugs, and it was he who first used Dapsone orally for the treatment of leprosy in Nigeria.
As the scale of leprosy worldwide was identified, the need for help to free up hardpressed doctors became clear, and in 1935 BELRA, in cooperation with Toc H, began sending lay workers to leprosy settlements, who soon became a vital part of the work.
In 1949 Dapsone in its pure form was pronounced the new, cheap and effective ‘cure’ for leprosy, and everyone thought that leprosy could now be eradicated within their lifetime. However, the bacilli became resistant to Dapsone monotherapy, and so a combination of drugs had to be adopted.
In 1945 Dr Muir (BELRA’s medical secretary) returned from the West Indies with samples of a new drug, “Dapsone”. By a quirk of fate, at a meeting in Northern Ireland, BELRA’s Dr Cochrane discovered that pure Dapsone worked better for mastitis in cows than derivatives. He decided to try this out on his leprosy patients in India, and found that the reduction in their bacilli was dramatic. Publishing his findings he sent a sample of Dapsone to Dr David Molesworth in Malaysia, but without indication of the dosage. Dr Molesworth, eager that all his patients should benefit from this new treatment, spread the supply thinly so that each patient received very little Dapsone. This time the results were even better with fewer harmful side effects. Findings were published and research began. When low dosage was pinpointed as the most effective method, the Leprosy Research Centre
In 1961 in Uzuakoli, Dr Stanley Browne, supported by BELRA (shortly to be renamed Lepra), undertook pioneering studies on B663, a newly synthesised rimino-phenazine compound. From his carefully conducted pilot and extended trials, this proved to be a powerful anti-leprosy drug, later called Clofazimine. It was also found to have an anti-inflammatory effect, but the spectre of drug resistance loomed on the horizon. At the National Institute for Medical Research in London this was proven through the work of Dr R.J.W. Rees, chairman of Lepra’s Medical Advisory Board. In 1975 the project of developing a vaccine against leprosy was given official backing by the World Health Organization. With funding from Lepra, Dr Rees and his colleagues in London made great strides developing methods of extracting and
purifying high yields of bacilli. By 1977 concern over the incidence of Dapsone resistance rose sharply, especially when Lepra took over as the International Federation of AntiLeprosy Organisations’ (ILEP) Co-ordinator in Malawi. In an effort to find an answer to this problem, Francis Harris, Lepra’s director, arranged a meeting in London for scientists from around the world, who drew up guidelines for leprosy prevention and treatment in the field. The “Heathrow Report” was accepted by the ILEP Medical Commission at their meeting in December 1977.
Following a successful feasibility study in 1980, Lepra began the Evaluation Project in Karonga District, Northern Malawi, and in 1983 Lepra introduced multidrug regimens for all leprosy patients throughout Malawi. Its medical teams treated over 15,000 patients. “Blister calendar packs” were introduced to all Lepra projects to ease the burden on delivery of treatment. Due to its success with this project, Lepra began the Karonga Vaccine Trial in Malawi in 1986, and also began trials with the new drug Ofloxacin. In 1995 the vaccine trial proved that two doses of the BCG inoculation proved effective against leprosy. Work to find an effective vaccine against leprosy still continues.
4
LepraNews
Winter 2014
www.lepra.org.uk
5
In 1927 a new preparation of Chaulmoogra oil was sent by BELRA to all parts of the Empire, both to government medical officers and missionaries. Dr Ernest Muir later found a less painful way of giving the oil based on Sir Leonard’s idea. This was later marketed as ‘Alepol.’
Dr Krishnamurthy continues Lepra’s work in Hyderabad
Lepra’s contribution to the fight against leprosy Founded in 1924, the British Empire Leprosy Relief Association (BELRA) was set up “... to rid the Empire of leprosy.” As there was no cure for leprosy then, BELRA set about finding one using the folk treatment of Chaulmoogra oil. BELRA’s founder, Sir Leonard Rogers, an eminent doctor in the Indian Medical Service, turned the oil into a ‘soap’ which could be injected thereby avoiding the nausea which taking the oil orally induced. Although this treatment was painful, it gave patients hope, for the first time, that leprosy could be cured.
To inform those working in the field, BELRA produced Leprosy Notes in 1928 – a pamphlet which later became the more scientific Leprosy Review. In 1931 BELRA was recognised as the first ‘leprosy prevention organisation’ at an International Congress in Manila.
in Uzuakoli, Nigeria, took this up and for the next year intensive work was done refining the process. Dr John Lowe took over from Dr Frank Davey at Uzuakoli in 1947 to work on a whole range of new drugs, and it was he who first used Dapsone orally for the treatment of leprosy in Nigeria.
As the scale of leprosy worldwide was identified, the need for help to free up hardpressed doctors became clear, and in 1935 BELRA, in cooperation with Toc H, began sending lay workers to leprosy settlements, who soon became a vital part of the work.
In 1949 Dapsone in its pure form was pronounced the new, cheap and effective ‘cure’ for leprosy, and everyone thought that leprosy could now be eradicated within their lifetime. However, the bacilli became resistant to Dapsone monotherapy, and so a combination of drugs had to be adopted.
In 1945 Dr Muir (BELRA’s medical secretary) returned from the West Indies with samples of a new drug, “Dapsone”. By a quirk of fate, at a meeting in Northern Ireland, BELRA’s Dr Cochrane discovered that pure Dapsone worked better for mastitis in cows than derivatives. He decided to try this out on his leprosy patients in India, and found that the reduction in their bacilli was dramatic. Publishing his findings he sent a sample of Dapsone to Dr David Molesworth in Malaysia, but without indication of the dosage. Dr Molesworth, eager that all his patients should benefit from this new treatment, spread the supply thinly so that each patient received very little Dapsone. This time the results were even better with fewer harmful side effects. Findings were published and research began. When low dosage was pinpointed as the most effective method, the Leprosy Research Centre
In 1961 in Uzuakoli, Dr Stanley Browne, supported by BELRA (shortly to be renamed Lepra), undertook pioneering studies on B663, a newly synthesised rimino-phenazine compound. From his carefully conducted pilot and extended trials, this proved to be a powerful anti-leprosy drug, later called Clofazimine. It was also found to have an anti-inflammatory effect, but the spectre of drug resistance loomed on the horizon. At the National Institute for Medical Research in London this was proven through the work of Dr R.J.W. Rees, chairman of Lepra’s Medical Advisory Board. In 1975 the project of developing a vaccine against leprosy was given official backing by the World Health Organization. With funding from Lepra, Dr Rees and his colleagues in London made great strides developing methods of extracting and
purifying high yields of bacilli. By 1977 concern over the incidence of Dapsone resistance rose sharply, especially when Lepra took over as the International Federation of AntiLeprosy Organisations’ (ILEP) Co-ordinator in Malawi. In an effort to find an answer to this problem, Francis Harris, Lepra’s director, arranged a meeting in London for scientists from around the world, who drew up guidelines for leprosy prevention and treatment in the field. The “Heathrow Report” was accepted by the ILEP Medical Commission at their meeting in December 1977.
Following a successful feasibility study in 1980, Lepra began the Evaluation Project in Karonga District, Northern Malawi, and in 1983 Lepra introduced multidrug regimens for all leprosy patients throughout Malawi. Its medical teams treated over 15,000 patients. “Blister calendar packs” were introduced to all Lepra projects to ease the burden on delivery of treatment. Due to its success with this project, Lepra began the Karonga Vaccine Trial in Malawi in 1986, and also began trials with the new drug Ofloxacin. In 1995 the vaccine trial proved that two doses of the BCG inoculation proved effective against leprosy. Work to find an effective vaccine against leprosy still continues.
6
LepraNews
Winter 2014
Our new project in Bangladesh
The project will take place in one of the poorest areas of Bangladesh where rates of disabling diseases are high and employment opportunities are few. Disability is both a cause and a consequence of poverty, affecting entire households through increased expenditure on care and loss of household income. People with disabilities are often marginalised in society and excluded from decision-making processes, even those which affect their own lives. Lepra will face this challenge by working with over 22,000 people affected by physical disability, including leprosy and elephantiasis related disability. The project will improve livelihood opportunities through skills training and business grants, reducing poverty for whole families. The project will also provide much needed disability services in health centres such as physiotherapy, ulcer care and corrective treatment for children born with clubfoot: services which are currently completely absent within the general health
system in Bangladesh. We will pioneer an integrated approach to disability care by combining services for leprosy as well as elephantiasis and other disabilities, whilst at the same time ensuring that these services are sustained in the long term by operating them in partnership with the government health service.
7
Ninety years
Lepra is delighted to have been approved for funding of a new project from the UK government Department for International Development. The project will focus on providing a comprehensive approach to increasing social inclusion and reducing poverty of people living with disabilities, as well as improving leprosy services, in three districts in Bangladesh.
www.lepra.org.uk
of leading the way
1924 1923
31st January The British Empire Leprosy Association (BELRA) was launched at Mansion House, London. Philanthropist Sir Frank Carter provided the funds to put the Association’s plan into action. HRH The Prince of Wales became Patron and Lord Chelmsford, retiring Viceroy of India, was the first Chairman of the committee which also included other eminent people from Commonwealth countries.
Learning about improving livelihoods
The project will also help groups of people with disabilities to form an advocacy and support network. This will give them a voice with which to demand their rights to employment, health services and other social and welfare services and increase their participation in their communities. The project will also benefit an additional 18,000 people through improved leprosy services in an effort to reduce the number of newly diagnosed people who develop disabilities.
Major General Sir Leonard Rogers, ex-Indian Medical Service, agreed to join Rev. Frank Oldrieve in forming a new Association. Rev. Oldrieve had conceived a plan to fight leprosy, starting with the folk cure of Chaulmoogra oil.
The Reverend P B “Tubby” Clayton, vicar of All Hallows by the Tower, London, met people with leprosy in Nigeria, which fired his enthusiasm for tackling the disease. Also founder of Toc H, an international charity, his call for volunteers brought over 300 lay workers.
1937
It is very encouraging to have gained recognition from the UK government that leprosy and disability remain serious barriers to development and efforts to reduce poverty and that people with disabilities must be put first in international development.
October-The first edition of the BELRA Quarterly magazine was published. Rights awareness in a self-help group
1952
1933
1945
Trials of Dapsone treatment started in India. In 1948 Dapsone was announced as a cheap and effective cure for leprosy. In 2014, it is used as part of multi-drug therapy for leprosy infections.
Our mobile exhibition van started to tour the UK, promoting our work. Two years later, the Association’s short title changed to Lepra.
1962 ars . Fo u r y e A R L E B f d Pa t r o n o h e v is it e became n e e u burgh, s Q in d e E h T f o HM he Duke ig e r ia h HRH T e n t in N it m w le t r, t e e t S la rosy iv e r L e p t h e O ji R
1959 At Ongino Leprosarium, Uganda, the first made-to-measure shoe was tried out to take the pressure off ulcerated feet. This had a wooden sole and rubber insole made from car tyres.
6
LepraNews
Winter 2014
Our new project in Bangladesh
The project will take place in one of the poorest areas of Bangladesh where rates of disabling diseases are high and employment opportunities are few. Disability is both a cause and a consequence of poverty, affecting entire households through increased expenditure on care and loss of household income. People with disabilities are often marginalised in society and excluded from decision-making processes, even those which affect their own lives. Lepra will face this challenge by working with over 22,000 people affected by physical disability, including leprosy and elephantiasis related disability. The project will improve livelihood opportunities through skills training and business grants, reducing poverty for whole families. The project will also provide much needed disability services in health centres such as physiotherapy, ulcer care and corrective treatment for children born with clubfoot: services which are currently completely absent within the general health
system in Bangladesh. We will pioneer an integrated approach to disability care by combining services for leprosy as well as elephantiasis and other disabilities, whilst at the same time ensuring that these services are sustained in the long term by operating them in partnership with the government health service.
7
Ninety years
Lepra is delighted to have been approved for funding of a new project from the UK government Department for International Development. The project will focus on providing a comprehensive approach to increasing social inclusion and reducing poverty of people living with disabilities, as well as improving leprosy services, in three districts in Bangladesh.
www.lepra.org.uk
of leading the way
1924 1923
31st January The British Empire Leprosy Association (BELRA) was launched at Mansion House, London. Philanthropist Sir Frank Carter provided the funds to put the Association’s plan into action. HRH The Prince of Wales became Patron and Lord Chelmsford, retiring Viceroy of India, was the first Chairman of the committee which also included other eminent people from Commonwealth countries.
Learning about improving livelihoods
The project will also help groups of people with disabilities to form an advocacy and support network. This will give them a voice with which to demand their rights to employment, health services and other social and welfare services and increase their participation in their communities. The project will also benefit an additional 18,000 people through improved leprosy services in an effort to reduce the number of newly diagnosed people who develop disabilities.
Major General Sir Leonard Rogers, ex-Indian Medical Service, agreed to join Rev. Frank Oldrieve in forming a new Association. Rev. Oldrieve had conceived a plan to fight leprosy, starting with the folk cure of Chaulmoogra oil.
The Reverend P B “Tubby” Clayton, vicar of All Hallows by the Tower, London, met people with leprosy in Nigeria, which fired his enthusiasm for tackling the disease. Also founder of Toc H, an international charity, his call for volunteers brought over 300 lay workers.
1937
It is very encouraging to have gained recognition from the UK government that leprosy and disability remain serious barriers to development and efforts to reduce poverty and that people with disabilities must be put first in international development.
October-The first edition of the BELRA Quarterly magazine was published. Rights awareness in a self-help group
1952
1933
1945
Trials of Dapsone treatment started in India. In 1948 Dapsone was announced as a cheap and effective cure for leprosy. In 2014, it is used as part of multi-drug therapy for leprosy infections.
Our mobile exhibition van started to tour the UK, promoting our work. Two years later, the Association’s short title changed to Lepra.
1962 ars . Fo u r y e A R L E B f d Pa t r o n o h e v is it e became n e e u burgh, s Q in d e E h T f o HM he Duke ig e r ia h HRH T e n t in N it m w le t r, t e e t S la rosy iv e r L e p t h e O ji R
1959 At Ongino Leprosarium, Uganda, the first made-to-measure shoe was tried out to take the pressure off ulcerated feet. This had a wooden sole and rubber insole made from car tyres.
8
LepraNews
Winter 2014
www.lepra.org.uk
9
1986 1966
1984 H Kamuzu r D y c n e ll xce e b e r - H is E w i, la id t h la a M f o 20th Octo t n is o u r s t Pr e s id e n t y r e . “ It la B in B a n d a , F ir e n o the n d a t io n s t to remove ly n o Lepra fou t o it s n t is p r o je c to correct d n a y a h o p e in t h d to ent ic h e x is t s ut to prev b s n io t le p r o s y w h a il s and mut t io n s .” d e f o r m it ie re genera u t u f in 1971 e enc it s o c c u r r
1972: An ATV appeal by Noele Gordon (an actress in the Crossroads series) led to a leprosy village in Nigeria being renamed “Crossroads Village”.
1990:
Our BOLEP project began in Sonepur in Orissa state where the caseload was 8,514: the highest number of cases in the district projects.
June. Sixteen visually impaired cub scouts from the 23rd Sevenoaks group, who attended the Royal London School for the Blind, raised more than £8,000 for Lepra research.
We became one of the first associations to use multidrug therapy and in 1976 became a full member of the International Federation of AntiLeprosy Associations (ILEP).
1977 More than 800 people, including many celebrities, donated to the Ring Appeal. An auction at Sotheby’s in London raised £38,000 for reconstructive surgery and an auction in Glasgow raised £22,000.
1988
1989: The inaugural meeting of the Leprosy Society of India. This extension to the Lepra family celebrates its 25th anniversary in February 2014.
1974: After 50 years in London, we relocated to Colchester
1978:
A new development – a “blister pack” with one month’s dated supply of drugs, first suggested by Lepra consultant Dr Colin McDougall to help patients to keep track of their medication. Lepra’s order for India at the end of the year cost £271,000.
W e ce le br a te d ou r d ia m on d ju bi le e w it h a se rv ic e of th a nk sg iv in g a t Al l Ha llo ws by th e To w er ch ur ch , Lo nd on , a tt en d ed by HM th e Q ue en a nd T he Ar ch bi sh op of Ca nt er bu ry R ob er t R un ci e
1972: HRH the Duke of Gloucester, our Vice President, visited the Kumi Leprosarium in Uganda.
1975:
Ashley Cooper’s Munroes Challenge, supported by our President Chris Bonington and others, raised more than £7,000
Our fundraising appeal featured Dapsone collection cards
18th February Mr Terry Vasey, Lepra Director, dedicated a new reconstructive surgical hospital, in Muniguda (Orissa, India),funded by the States of Jersey through Lepra. 1994:
1992 We funded research into a new surgical technique in cooperation with the Royal College of Surgeons in London and a southern India leprosy centre. Early results showed a 70% success rate in restoring sense of touch and temperature to damaged feet and hands.
1991
We started a Book of Remembrance to record any legacy or donation made “in memoriam” or in lieu of flowers and also recognition of outstanding service.
1994
7th December The Commonwealth Carol Service at St Martin in the Fields was organised by the Commonwealth Trust in aid of Lepra. The address, written by author P D James, was delivered by actor Paul Scofield.
1982: Our first Edinburgh to St Andrews bike ride, which continues in 2014!
1984
Our jewellery appeal - “An Eye for a Gem – a Gem for an Eye” – raised funds for eye surgery and for training of medical workers in identifying and assisting with eye damage caused by leprosy.
The BBC Children’s Television Blue Peter Appeal featured a “bring and buy sale”. The appeal, which raised more than £2.7 million enabled us to begin new programmes in India and Brazil. We launched our Junagardh Leprosy Control Programme (JUNLEP) project in Kalahandi district in Orissa state, supplying jeeps, motorcycles, and bicycles to get the necessary treatment to patients in remote rural villages. On 14th December 1999, the Blue Peter Health and Research Centre in Hyderabad was inaugurated by Dr Michael J Herridge, Deputy British High Commissioner. The centre continutes to provide services to patients, training for health workers and research into leprosy, TB and HIV/AIDS.
1996
8
LepraNews
Winter 2014
www.lepra.org.uk
9
1986 1966
1984 H Kamuzu r D y c n e ll xce e b e r - H is E w i, la id t h la a M f o 20th Octo t n is o u r s t Pr e s id e n t y r e . “ It la B in B a n d a , F ir e n o the n d a t io n s t to remove ly n o Lepra fou t o it s n t is p r o je c to correct d n a y a h o p e in t h d to ent ic h e x is t s ut to prev b s n io t le p r o s y w h a il s and mut t io n s .” d e f o r m it ie re genera u t u f in 1971 e enc it s o c c u r r
1972: An ATV appeal by Noele Gordon (an actress in the Crossroads series) led to a leprosy village in Nigeria being renamed “Crossroads Village”.
1990:
Our BOLEP project began in Sonepur in Orissa state where the caseload was 8,514: the highest number of cases in the district projects.
June. Sixteen visually impaired cub scouts from the 23rd Sevenoaks group, who attended the Royal London School for the Blind, raised more than £8,000 for Lepra research.
We became one of the first associations to use multidrug therapy and in 1976 became a full member of the International Federation of AntiLeprosy Associations (ILEP).
1977 More than 800 people, including many celebrities, donated to the Ring Appeal. An auction at Sotheby’s in London raised £38,000 for reconstructive surgery and an auction in Glasgow raised £22,000.
1988
1989: The inaugural meeting of the Leprosy Society of India. This extension to the Lepra family celebrates its 25th anniversary in February 2014.
1974: After 50 years in London, we relocated to Colchester
1978:
A new development – a “blister pack” with one month’s dated supply of drugs, first suggested by Lepra consultant Dr Colin McDougall to help patients to keep track of their medication. Lepra’s order for India at the end of the year cost £271,000.
W e ce le br a te d ou r d ia m on d ju bi le e w it h a se rv ic e of th a nk sg iv in g a t Al l Ha llo ws by th e To w er ch ur ch , Lo nd on , a tt en d ed by HM th e Q ue en a nd T he Ar ch bi sh op of Ca nt er bu ry R ob er t R un ci e
1972: HRH the Duke of Gloucester, our Vice President, visited the Kumi Leprosarium in Uganda.
1975:
Ashley Cooper’s Munroes Challenge, supported by our President Chris Bonington and others, raised more than £7,000
Our fundraising appeal featured Dapsone collection cards
18th February Mr Terry Vasey, Lepra Director, dedicated a new reconstructive surgical hospital, in Muniguda (Orissa, India),funded by the States of Jersey through Lepra. 1994:
1992 We funded research into a new surgical technique in cooperation with the Royal College of Surgeons in London and a southern India leprosy centre. Early results showed a 70% success rate in restoring sense of touch and temperature to damaged feet and hands.
1991
We started a Book of Remembrance to record any legacy or donation made “in memoriam” or in lieu of flowers and also recognition of outstanding service.
1994
7th December The Commonwealth Carol Service at St Martin in the Fields was organised by the Commonwealth Trust in aid of Lepra. The address, written by author P D James, was delivered by actor Paul Scofield.
1982: Our first Edinburgh to St Andrews bike ride, which continues in 2014!
1984
Our jewellery appeal - “An Eye for a Gem – a Gem for an Eye” – raised funds for eye surgery and for training of medical workers in identifying and assisting with eye damage caused by leprosy.
The BBC Children’s Television Blue Peter Appeal featured a “bring and buy sale”. The appeal, which raised more than £2.7 million enabled us to begin new programmes in India and Brazil. We launched our Junagardh Leprosy Control Programme (JUNLEP) project in Kalahandi district in Orissa state, supplying jeeps, motorcycles, and bicycles to get the necessary treatment to patients in remote rural villages. On 14th December 1999, the Blue Peter Health and Research Centre in Hyderabad was inaugurated by Dr Michael J Herridge, Deputy British High Commissioner. The centre continutes to provide services to patients, training for health workers and research into leprosy, TB and HIV/AIDS.
1996
LepraNews
10
1998:
We applied our expertise and skills to provide integrated care, working with people with TB, HIV or AIDS, with some funding from the UK government Department for International Development.
1998:
Supported by a National Lottery Charities Board award, we started work in preventing disabilities caused by long-term effects of leprosy in Mayurbanjh, India. We funded vehicles, equipment, educational materials, salaries and training in four projects in Orissa, India as well as providing a revolving loan fund to help people regain their economic livelihood and dignity in their communities. In Brazil, we supported leprosy control programmes in four states as well as the Brazil National Programme and a rehabilitation project.
1999
Winter 2014
1998
Lizzie Dearling, events coordinator.
The new A d r ia n a r o se, named after a B r a z il ia n g ir l who fea in t h e B lu tured e Pe t e r a p p e a l, w a s la u n c h e d at the Ch e ls e a S h o w.
2000
23rd February HM The Queen and HRH The Du Edinburgh atte ke of nded the recept ion for Lepra’s Dignity art com Qu est for petition, held at The Royal Geog Society, London raphical . The competit ion was open to residents aged UK 16 to 24. A para lle l competition wa held in India an s d Brazil.
2000 To take health education to the communities, we introduced health education vans in India, presenting messages in a variety of media.
Our celebrity shoe auction was launched on eBay and raised £10,100, reflecting our focus on protection of feet to prevent further damage to people coping with the disabilities caused by leprosy. 2006: We set up health camps in Bangladesh to test for TB 2011: A new study from the Blue Peter Health Research Centre identified new biomarkers to detect TB early in HIV-positive people. 2012: Focusing on women with elephantiasis or leprosy, we started self-support groups and also trained 300 women in tailoring and embroidery in Arogya Disha, India 2013: January We started a new research project “Poverty reduction through strengthened health systems” in Bangladesh, funded by The Leprosy Mission Canada and American Leprosy Missions.
11
“More than 100 people have taken part in our India bike rides in recent years”
At the request of the government of Bang ladesh, we took over respo nsibility for leprosy control work in Sirajganj an d Pabna districts. Le pra Bangladesh had been registered in 1999.
2002
www.lepra.org.uk
Cyclists and runners – we need you! From March to September, we have opportunities for you and your friends and family to support Lepra and have fun at the same time. Get in training now for the adidas Silverstone Half Marathon on 2nd March. In April, choose between Paris (Marathon de Paris) on the 6th or London (Virgin Money London Marathon) on the 13th (or both!). You really will have to choose where to be on 25th May as the Edinburgh Marathon and BUPA London 10km are both on that day. Complete the year’s challenges in Germany on 28th September in the 41st BMW Berlin Marathon. We haven’t forgotten the cyclists… sign up with us for the Prudential Ride London-Surrey 100 on Sunday 10th August. Our annual Edinburgh to St Andrews (68 miles) bike ride will be in June.
India bike ride 2013 In 1996, the verdict of our first India bike riders was “truly an adventure of a lifetime”. Congratulations and a big “thank you” to Ingrid Bromley, Howard Crossley, Josh Cummins, Sandra Horne, Liz Kennedy, Jane Langdon, Tamy Matanky, Rachel Posner and Belinda Pyke, who completed the 2013 bike ride in India and have raised nearly £20,000 for Lepra. Sandra Horne, leader of the team, first took part in the Lepra India bike ride in 2002. She liked the idea of being able to visit some of the projects for which the money would be raised and this is still a major part of the enjoyment and value of the trip. The cyclists are full of praise for all of the support team in India. Sandra commented: “Over the years, we have come to know the families of the team in India and it’s lovely to meet up again with them. This is a unique feature of the Lepra event and really makes it all worthwhile.” To find out more call us on 01206 216700 or email events@lepra.org.uk
LepraNews
10
1998:
We applied our expertise and skills to provide integrated care, working with people with TB, HIV or AIDS, with some funding from the UK government Department for International Development.
1998:
Supported by a National Lottery Charities Board award, we started work in preventing disabilities caused by long-term effects of leprosy in Mayurbanjh, India. We funded vehicles, equipment, educational materials, salaries and training in four projects in Orissa, India as well as providing a revolving loan fund to help people regain their economic livelihood and dignity in their communities. In Brazil, we supported leprosy control programmes in four states as well as the Brazil National Programme and a rehabilitation project.
1999
Winter 2014
1998
Lizzie Dearling, events coordinator.
The new A d r ia n a r o se, named after a B r a z il ia n g ir l who fea in t h e B lu tured e Pe t e r a p p e a l, w a s la u n c h e d at the Ch e ls e a S h o w.
2000
23rd February HM The Queen and HRH The Du Edinburgh atte ke of nded the recept ion for Lepra’s Dignity art com Qu est for petition, held at The Royal Geog Society, London raphical . The competit ion was open to residents aged UK 16 to 24. A para lle l competition wa held in India an s d Brazil.
2000 To take health education to the communities, we introduced health education vans in India, presenting messages in a variety of media.
Our celebrity shoe auction was launched on eBay and raised £10,100, reflecting our focus on protection of feet to prevent further damage to people coping with the disabilities caused by leprosy. 2006: We set up health camps in Bangladesh to test for TB 2011: A new study from the Blue Peter Health Research Centre identified new biomarkers to detect TB early in HIV-positive people. 2012: Focusing on women with elephantiasis or leprosy, we started self-support groups and also trained 300 women in tailoring and embroidery in Arogya Disha, India 2013: January We started a new research project “Poverty reduction through strengthened health systems” in Bangladesh, funded by The Leprosy Mission Canada and American Leprosy Missions.
11
“More than 100 people have taken part in our India bike rides in recent years”
At the request of the government of Bang ladesh, we took over respo nsibility for leprosy control work in Sirajganj an d Pabna districts. Le pra Bangladesh had been registered in 1999.
2002
www.lepra.org.uk
Cyclists and runners – we need you! From March to September, we have opportunities for you and your friends and family to support Lepra and have fun at the same time. Get in training now for the adidas Silverstone Half Marathon on 2nd March. In April, choose between Paris (Marathon de Paris) on the 6th or London (Virgin Money London Marathon) on the 13th (or both!). You really will have to choose where to be on 25th May as the Edinburgh Marathon and BUPA London 10km are both on that day. Complete the year’s challenges in Germany on 28th September in the 41st BMW Berlin Marathon. We haven’t forgotten the cyclists… sign up with us for the Prudential Ride London-Surrey 100 on Sunday 10th August. Our annual Edinburgh to St Andrews (68 miles) bike ride will be in June.
India bike ride 2013 In 1996, the verdict of our first India bike riders was “truly an adventure of a lifetime”. Congratulations and a big “thank you” to Ingrid Bromley, Howard Crossley, Josh Cummins, Sandra Horne, Liz Kennedy, Jane Langdon, Tamy Matanky, Rachel Posner and Belinda Pyke, who completed the 2013 bike ride in India and have raised nearly £20,000 for Lepra. Sandra Horne, leader of the team, first took part in the Lepra India bike ride in 2002. She liked the idea of being able to visit some of the projects for which the money would be raised and this is still a major part of the enjoyment and value of the trip. The cyclists are full of praise for all of the support team in India. Sandra commented: “Over the years, we have come to know the families of the team in India and it’s lovely to meet up again with them. This is a unique feature of the Lepra event and really makes it all worthwhile.” To find out more call us on 01206 216700 or email events@lepra.org.uk
12
LepraNews
Winter 2014
A key milestone: our groundbreaking research in Malawi As leprosy is such a slow-growing disease, years can elapse between infection and manifestation, making it very difficult to know how someone was infected, or why they developed it. The Lepra Evaluation Project began in 1979 as it was felt that by studying an entire population over several years rather than individual patients, common denominators might be found which could pinpoint the source of infection, how it was transmitted and risk factors for acquiring the disease.
www.lepra.org.uk
Facilities were set up to collect and enter data on the computer, for laboratory work and for the maintenance of motor vehicles. With no telecommunication in the area, radio contact was set up with Lepra’s representative in Blantyre, 850 kms away. Dr Dick Rees packing the vaccines and placebo in the UK
Karonga District in Malawi was deemed an ideal site for the project, and headquarters were established at Chilumba.
Between 1980 and 1984 the population of the entire district (approximately 112,000 people) was visited, interviewed and physically examined by four teams who systematically covered the district on foot, by bicycle and later by motorcycle from mobile camps. Every individual, each household and each building within a household was numbered. For every individual a questionnaire was completed on age, sex, parents, village of birth, level of education, occupation, hygiene etc. All buildings were measured and construction materials noted to see whether the bacilli could exist in the soil or the buildings. It was recorded which people within a household slept in which building. Each household was located within ten square metres on specially developed aerial photographs. Finally, each individual was examined from head to foot for signs of leprosy and for characteristics which would help in identification, such as scars or birthmarks. Anyone found to have leprosy was registered and treated. A second survey from 1985 to 1989 identified those who had developed leprosy since their previous examination. Information from the first survey was compared for common factors and contrasted with information on those not infected. To make the exercise more worthwhile, a vaccine trial was mounted. During the first survey it was noted that scars from BCG (a vaccine against TB) were
13
more common in those who didn’t have leprosy than in those who did, suggesting BCG vaccine gives protection against leprosy. Meanwhile, a new leprosy vaccine had been developed, but not yet tested in large numbers of people. Approximately 120,000 people agreed to take part in this vaccine trial. The aim was to examine for both leprosy and TB and find whether the protection offered by BCG could be improved by adding either a repeat BCG or the new leprosy vaccine. The trial was ‘double blind’, i.e. neither the vaccinator nor the person being vaccinated knew which vaccine was given. The code for each vaccine was kept by a third party in the UK. The HIV epidemic in Karonga district in the mid-1980s caused concern. Since the depressed immunity characteristic of HIV infection could interfere with the effects of the various vaccines used, the project embarked on a separate study, comparing the HIV status of leprosy and TB cases with adequate controls – individuals not known to have leprosy or TB who otherwise were at similar risk to being infected with HIV - so the effect of HIV on leprosy and TB could be assessed. At the end of the second survey, new cases of leprosy and TB were detected by field staff posted to all health units in the district. Everyone visiting these centres, regardless of the reason for attendance, were interviewed to establish their identity number (with the aid of enormous computer listings containing the entire population) and subsequently examined. In addition, a sample survey of 5,000-6,000 individuals was held annually in different parts of the district to validate the method of case finding at health centres. All project data was entered onto
A village health worker examines a child
computers and shipped to the London School of Hygiene & Tropical Medicine. In Karonga district most people didn’t know their date of birth, names are commonly changed and the various languages are strictly oral. It was a formidable task to keep track of so large a number of people over so many years. Credit is due to the very hardworking, dedicated local staff of the project. The results of the vaccine trial warranted publication in The Lancet of 5th July 1996, as the largest trial carried out in Africa as well as being the first trial of repeat BCG vaccination and the only combined leprosy/TB vaccine trial. Research showed that a second vaccination with BCG reduced the risk of leprosy infection by a significant amount over and above the first vaccination routinely given. Reports stated “This trial provides important insights into leprosy and tuberculosis, and shows that a repeated BCG vaccination can provide protection against leprosy infection as high as 85%”. Although mass vaccination was impractical, the results gave valuable insights for continuing research.
12
LepraNews
Winter 2014
A key milestone: our groundbreaking research in Malawi As leprosy is such a slow-growing disease, years can elapse between infection and manifestation, making it very difficult to know how someone was infected, or why they developed it. The Lepra Evaluation Project began in 1979 as it was felt that by studying an entire population over several years rather than individual patients, common denominators might be found which could pinpoint the source of infection, how it was transmitted and risk factors for acquiring the disease.
www.lepra.org.uk
Facilities were set up to collect and enter data on the computer, for laboratory work and for the maintenance of motor vehicles. With no telecommunication in the area, radio contact was set up with Lepra’s representative in Blantyre, 850 kms away. Dr Dick Rees packing the vaccines and placebo in the UK
Karonga District in Malawi was deemed an ideal site for the project, and headquarters were established at Chilumba.
Between 1980 and 1984 the population of the entire district (approximately 112,000 people) was visited, interviewed and physically examined by four teams who systematically covered the district on foot, by bicycle and later by motorcycle from mobile camps. Every individual, each household and each building within a household was numbered. For every individual a questionnaire was completed on age, sex, parents, village of birth, level of education, occupation, hygiene etc. All buildings were measured and construction materials noted to see whether the bacilli could exist in the soil or the buildings. It was recorded which people within a household slept in which building. Each household was located within ten square metres on specially developed aerial photographs. Finally, each individual was examined from head to foot for signs of leprosy and for characteristics which would help in identification, such as scars or birthmarks. Anyone found to have leprosy was registered and treated. A second survey from 1985 to 1989 identified those who had developed leprosy since their previous examination. Information from the first survey was compared for common factors and contrasted with information on those not infected. To make the exercise more worthwhile, a vaccine trial was mounted. During the first survey it was noted that scars from BCG (a vaccine against TB) were
13
more common in those who didn’t have leprosy than in those who did, suggesting BCG vaccine gives protection against leprosy. Meanwhile, a new leprosy vaccine had been developed, but not yet tested in large numbers of people. Approximately 120,000 people agreed to take part in this vaccine trial. The aim was to examine for both leprosy and TB and find whether the protection offered by BCG could be improved by adding either a repeat BCG or the new leprosy vaccine. The trial was ‘double blind’, i.e. neither the vaccinator nor the person being vaccinated knew which vaccine was given. The code for each vaccine was kept by a third party in the UK. The HIV epidemic in Karonga district in the mid-1980s caused concern. Since the depressed immunity characteristic of HIV infection could interfere with the effects of the various vaccines used, the project embarked on a separate study, comparing the HIV status of leprosy and TB cases with adequate controls – individuals not known to have leprosy or TB who otherwise were at similar risk to being infected with HIV - so the effect of HIV on leprosy and TB could be assessed. At the end of the second survey, new cases of leprosy and TB were detected by field staff posted to all health units in the district. Everyone visiting these centres, regardless of the reason for attendance, were interviewed to establish their identity number (with the aid of enormous computer listings containing the entire population) and subsequently examined. In addition, a sample survey of 5,000-6,000 individuals was held annually in different parts of the district to validate the method of case finding at health centres. All project data was entered onto
A village health worker examines a child
computers and shipped to the London School of Hygiene & Tropical Medicine. In Karonga district most people didn’t know their date of birth, names are commonly changed and the various languages are strictly oral. It was a formidable task to keep track of so large a number of people over so many years. Credit is due to the very hardworking, dedicated local staff of the project. The results of the vaccine trial warranted publication in The Lancet of 5th July 1996, as the largest trial carried out in Africa as well as being the first trial of repeat BCG vaccination and the only combined leprosy/TB vaccine trial. Research showed that a second vaccination with BCG reduced the risk of leprosy infection by a significant amount over and above the first vaccination routinely given. Reports stated “This trial provides important insights into leprosy and tuberculosis, and shows that a repeated BCG vaccination can provide protection against leprosy infection as high as 85%”. Although mass vaccination was impractical, the results gave valuable insights for continuing research.
14
LepraNews
Dr Desikan studied medicine, qualifying in 1950 from Mysore University. In 1952 he joined the Gandhi Memorial Leprosy Foundation (GMLF) under the “Life Workers’ Scheme” i.e. those devoting their life to leprosy patients. GMLF developed a new strategy of leprosy control and Dr Desikan’s unique contribution to this was his vision of systematic yearly house-to-house surveys for active case finding. This involved continuous visits to villages by foot, bicycle or bullock cart, and wading through rivers and marshland. This work was so effective that it became the Indian National Policy for Leprosy Control, and was also later adopted by the World Health Organization. Dr Desikan went to the Central Leprosy Teaching & Research Centre in Chingleput to further his studies, and became Director of the Central JALMA Institute for Leprosy in Agra. Here the number of registered patients quickly rose from 7,000 to 25,000 under his gentle and caring leadership. He also started a home for disabled and destitute patients with a school for their children. Single-handedly, Dr Desikan started three leprosy clinics, treating nearly 7,000 patients; these have since become the biggest control units in the district and are now run by the government.
female children faced cruel discrimination by preventing them from going to school or getting a job, thereby robbing them of any hope of marriage. Over the years their painstaking work to break down social prejudices surrounding leprosy enabled many of these girls to have professional lives, happy marriages, and children of their own.
In 1987 the Lepra India Society was set up and this new organisation was headed by Dr Desikan.The following year, the Indian government signed an agreement with Lepra covering additional support under the When Lepra moved back into National Leprosy Eradication India, they sought out the most Programme for work in Bidar experienced and respected District, Karnataka State – Lepra’s first project in India scientist in the leprosy field and it was, naturally, to Dr since 1947. Lepra also offered Desikan that they turned. support for the districts of He became Lepra’s Clinical Medak and Karimnagar, all with Consultant in India in April Dr Desikan’s guiding hand and 1987, and in September the diplomatic skills. Project Director of the Leprosy Histopathology Centre in Dr Desikan spent many years Sevagram, near Wardha. At guiding Lepra India’s work, Sevagram he and his wife, particularly in the tribal Kamala, started a home for districts of Western Orissa – a mothers with leprosy whose hard and challenging task,
Winter 2014
www.lepra.org.uk
15
Dr K.V. Desikan Leprosy is not a glamorous career choice, so those who work in this field are exceptional people, and Dr Desikan is one of them.
but with very encouraging results – as well as running his own pathology department in Sevagram. A truly international scientist with tremendous experience and knowledge, Dr Desikan has been honoured by many organisations and countries. He is the recipient of the Indian Council of Medical Research/ JALMA (Japanese Leprosy Mission for Asia) Oration Award, the KC Sahu Gold Medal, the Gold Medal of the Argentina Leprosy Foundation, the Certificate of Honour, Medical Research Institute, Florida Institute of Technology, and the Damien-Dutton Award 2000, from the DamienDutton Society for Leprosy Aid, Bellmore, USA, and most recently the International Gandhi Award for services to leprosy work. Dr Desikan is an inspiration to all who work with him. Nevertheless, he refuses to take credit for his life-time achievements: “I owe a debt of gratitude to people who have helped me in my difficult days. The only way of paying them back is by helping others… The work that I have done has only been possible by the kindness of those who have generously donated financially to Lepra”. Despite being in his mideighties, Dr Desikan still travels every month to one of our centres to provide support for the most difficult cases.
Born in 1927, Dr Desikan was one of 12 children of a very poor family. Aged seven he was sent to relatives in Hyderabad where he worked for his keep while attending school. His own desperately poor beginnings helped him empathise with the poor. At 14 he developed a patch on his arm which at first was a source of novelty as it had no feeling and pins could be stuck into it without pain. However, on Independence Day 1947, he suddenly developed a paralysis in his hand and leprosy was diagnosed. After three years of painful chaulmoogra oil injections and seven years of Dapsone therapy he was finally cured, and his future life and work were settled.
Dr K V Desikan
14
LepraNews
Dr Desikan studied medicine, qualifying in 1950 from Mysore University. In 1952 he joined the Gandhi Memorial Leprosy Foundation (GMLF) under the “Life Workers’ Scheme” i.e. those devoting their life to leprosy patients. GMLF developed a new strategy of leprosy control and Dr Desikan’s unique contribution to this was his vision of systematic yearly house-to-house surveys for active case finding. This involved continuous visits to villages by foot, bicycle or bullock cart, and wading through rivers and marshland. This work was so effective that it became the Indian National Policy for Leprosy Control, and was also later adopted by the World Health Organization. Dr Desikan went to the Central Leprosy Teaching & Research Centre in Chingleput to further his studies, and became Director of the Central JALMA Institute for Leprosy in Agra. Here the number of registered patients quickly rose from 7,000 to 25,000 under his gentle and caring leadership. He also started a home for disabled and destitute patients with a school for their children. Single-handedly, Dr Desikan started three leprosy clinics, treating nearly 7,000 patients; these have since become the biggest control units in the district and are now run by the government.
female children faced cruel discrimination by preventing them from going to school or getting a job, thereby robbing them of any hope of marriage. Over the years their painstaking work to break down social prejudices surrounding leprosy enabled many of these girls to have professional lives, happy marriages, and children of their own.
In 1987 the Lepra India Society was set up and this new organisation was headed by Dr Desikan.The following year, the Indian government signed an agreement with Lepra covering additional support under the When Lepra moved back into National Leprosy Eradication India, they sought out the most Programme for work in Bidar experienced and respected District, Karnataka State – Lepra’s first project in India scientist in the leprosy field and it was, naturally, to Dr since 1947. Lepra also offered Desikan that they turned. support for the districts of He became Lepra’s Clinical Medak and Karimnagar, all with Consultant in India in April Dr Desikan’s guiding hand and 1987, and in September the diplomatic skills. Project Director of the Leprosy Histopathology Centre in Dr Desikan spent many years Sevagram, near Wardha. At guiding Lepra India’s work, Sevagram he and his wife, particularly in the tribal Kamala, started a home for districts of Western Orissa – a mothers with leprosy whose hard and challenging task,
Winter 2014
www.lepra.org.uk
15
Dr K.V. Desikan Leprosy is not a glamorous career choice, so those who work in this field are exceptional people, and Dr Desikan is one of them.
but with very encouraging results – as well as running his own pathology department in Sevagram. A truly international scientist with tremendous experience and knowledge, Dr Desikan has been honoured by many organisations and countries. He is the recipient of the Indian Council of Medical Research/ JALMA (Japanese Leprosy Mission for Asia) Oration Award, the KC Sahu Gold Medal, the Gold Medal of the Argentina Leprosy Foundation, the Certificate of Honour, Medical Research Institute, Florida Institute of Technology, and the Damien-Dutton Award 2000, from the DamienDutton Society for Leprosy Aid, Bellmore, USA, and most recently the International Gandhi Award for services to leprosy work. Dr Desikan is an inspiration to all who work with him. Nevertheless, he refuses to take credit for his life-time achievements: “I owe a debt of gratitude to people who have helped me in my difficult days. The only way of paying them back is by helping others… The work that I have done has only been possible by the kindness of those who have generously donated financially to Lepra”. Despite being in his mideighties, Dr Desikan still travels every month to one of our centres to provide support for the most difficult cases.
Born in 1927, Dr Desikan was one of 12 children of a very poor family. Aged seven he was sent to relatives in Hyderabad where he worked for his keep while attending school. His own desperately poor beginnings helped him empathise with the poor. At 14 he developed a patch on his arm which at first was a source of novelty as it had no feeling and pins could be stuck into it without pain. However, on Independence Day 1947, he suddenly developed a paralysis in his hand and leprosy was diagnosed. After three years of painful chaulmoogra oil injections and seven years of Dapsone therapy he was finally cured, and his future life and work were settled.
Dr K V Desikan
16
Lepra is lucky to have so many supporters (but we always welcome more!) Baroness Gerda Von Posch – 30 years of valued service to Lepra Baroness Gerda Von Posch celebrated 30 years of outstanding contribution to Lepra, with her husband Roger Kember and friends, at The Century Club on Saturday 23rd November 2013. Gerda worked tirelessly with her good friend Alexandra Eversole of the Westminster committee for many years before forming the Chelsea and Kensington committee. With the loyal members of the committee, she has raised over £100,000 in the last nine years. “Thank you” seems inadequate for all the hard work, commitment and love that Gerda has brought to her tireless effort on behalf of Lepra but in this special 90th year we thank her most sincerely.
Baroness Gerda Von Posch with her husband
Reigate Grammar School’s Zumbathon
Are you part of an organisation or team which could help us? We would love to hear your ideas. Call us on 01206 216700 to tell us how you might like to raise funds.
Payroll giving
Look at how the first year students at Reigate Grammar School raised money for Lepra! Esther Featherstone led a Zumbathon for all of the students who came up with lots more ideas. Sponsored events were a 5km swim, offthe-road “Zap the Zigzag” cycle, 5km run in a tiger onesie, 1 mile on a unicycle, silence (and wearing a hat for three days!), using crutches, shoe shining and a modern biathlon (run and swim). But that’s not all… they also ran a tuck shop, cake sales and three brave students stood in the stocks and faced a barrage of wet sponges!
Anna Ansted, a Lepra community fundraiser, visited the school in November to share information about Lepra’s life-changing work. In December, she returned to collect the donation of more than £4,200 and to present a plaque. Each student who raised more than £25 received a special Lepra “bendy man” clock.
You can make a regular taxfree donation direct from your salary with payroll giving. If your employer operates a payroll giving scheme, just let them know how much you want to give and how often. Your gift is then transferred to us from your pre-tax salary. Contact us to find out more on 01206 216700 or fundraising@lepra.org.uk Bendy man clock
Many ways make a difference From April to October 2013, churches have raised more than £26,000 for Lepra. We also have some great “crafty” supporters who make and sell patchwork Christmas stockings, damson jam, knitted baby clothes and much more and others who run coffee mornings, bring and buy sales, raffles and sponsored events.
facebook.com/LepraHealthinAction @Lepra_HinA
Lepra, 28 Middleborough, Colchester, Essex, CO1 1TG Tel. +44 (0) 1206 216700 Fax. +44 (0) 1206 762151 info@lepra.org.uk www.lepra.org.uk Registered Charity Number 213251 (England and Wales) SC039715 (Scotland) Lepra is a company limited by guarantee, registered in England and Wales. Registered Number 324748
Shopping online This really is easy! Do you ever shop online? You can donate to Lepra at no cost to yourself. Find out more at http://www.easyfundraising. org.uk/how-it-works/. There are also regular competitions to win prizes for yourself and for Lepra.