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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

FEATURE: 'Dear Dr. Noto'

The Leprosy Mailing List is a forum for information exchange . and for sounding off.

The Leprosy Mailing List (LML) is a free email list for sharing information via the Internet among people all over the world working in the field of leprosy. It was established in February 2001 at the Centre for Training and Research in Public Health (Cefpas) in Caltanissetta, Italy. Since June 2005, it has been hosted by the National Leprosy Referral Centre, Department of Dermatology, at San Martino University Hospital, in Genoa, Italy.

The specific objectives of the LML are to: 1) divulge information about leprosy, its causes, prevention and treatment; 2) share information about management of leprosy control activities and programs; 3) share information about socio-cultural aspects of leprosy and rehabilitation of patients with disabilities; 4) offer a distance learning tool in leprosy for health professionals; and 5) create a forum to discuss the main issues on leprosy and its control activities and programs.

At the beginning the list was circulated among a few friends who had experience of leprosy work in Africa. Soon it became popular among leprosy workers on all five continents. Today the LML has about 500 subscribers from a variety of fields and specializations including leprosy control, research, public health, dermatology, tuberculosis, ophthalmology, neurology, infectious diseases, charity work and publishing.

LML is an independent forum run on a voluntary basis. Contributions emailed to the moderator are edited in a common format and circulated among subscribers. Prior to distribution, there is an exchange of opinions between the moderator and the correspondent in order to clarify or modify points as required. All contributions to the LML are accepted as far as they are relevant to leprosy.

"Over the years, various issues have aroused fierce debate."

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The LML began as a list circulated among a few friends who had experience of leprosy work in Africa.

'Explosion' of Messages

Over the years, various issues have aroused fierce debate. In 2002, some months before the 16th International Leprosy Congress in Brazil, word reach the LML that the WHO wanted to recommend a new, uniform six-month treatment regimen for both paucibacillary and multibacillary leprosy. There was an explosion of messages on the LML, pointing out that as yet no proof of the efficacy of such a regimen existed.

The use of thalidomide in the treatment of erythema nodosum leprosum reaction1 has aroused much controversy. There has also been passionate debate about the "elimination" strategy adopted by the WHO, while the use of prevalence or incidence in leprosy statistics was a key topic for many months.

In the last year it has been interesting to note how some colleagues have repeatedly drawn attention to the difficulties in making timely diagnosis of leprosy in the lepromatous form of the disease, particularly when no slit-skin smear service is available.

Time Constraints

Due to time constraints I am often tempted to give up the LML, and I find editing contributions in English is a difficult task that I would happily delegate to someone else. However, I receive messages from all over the world from people who say how much they appreciate the LML, so I assume there are people in the field for whom it is important in their leprosy work.

Colleagues working at the central level in health ministries of leprosy endemic countries tell me that they copy LML messages and circulate them at the peripheral level. Leprosy control officers write to me that they have used LML documents in their training activities, or as reference for papers to be published or to back up requests to their ministries. A WHO leprosy officer told me that he prints out and files all LML messages and documents, although, like some other readers of the LML I know of, he never posts messages himself.

Thanks to the kind help of Dr. Sunil Deepak of the Associazione Italiana Amici di Raoul Follereau (AIFO) in Bologna, Italy, past contributions to the mailing list dating back to 2003 can be found online in the LML Archives, which were started in 2006. To access the archives, and to subscribe to the mailing list, visit the AIFO website2. I look forward to hearing from you!


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AUTHOR: Dr. Salvatore Noto

Dr. Salvatore Noto is Medical Officer, Leprosy and Dermatology, at San Martino University Hospital in Genoa, Italy. He is moderator of the Leprosy Mailing List.

Footnotes

1 A serious immunological complication of leprosy that causes inflammation of the skin, nerves and other organs.

2 http://www.aifo.it/english/resources/online/lmlarchives/index.htm