(LML) Fear from leprosy and lepraphobia

 

Leprosy Mailing List – December 28,  2017

Ref.:    (LML) Fear from leprosy and lepraphobia

From: KP Dhakal, Kathmandu, Nepal

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Dear Pieter,

Thank you for raising this important issue of leprophobia.

As a leprologist working in leprosy clinics and hospitals and in leprosy control programs in field situation in communities for over 30 years in Nepal, I used to face similar incidents of people fearing from leprosy. Many times, people from leprosy field label it as stigma against leprosy, but in my experience, leprophobia is the factor which causes stigma against leprosy and that stigma causes fear from leprosy, a vicious cycle. This is the fear of getting disease and consequently fear of being isolated. This is the reason why people isolate leprosy affected persons in the family, in the neighbourhoods or even in the communities.

During my work, I came across number of health workers taking medicines (MDT) secretly in order to prevent themselves from getting the disease. I encountered a nurse working in primary health centre, who was also looking after the leprosy patients there, felt some tingling sensation on her fingers. This phenomenon she related with leprosy and was so much anxious and started consulting to different hospitals including a number of leprosy hospitals. She did all sorts of investigations, visited big leprosy hospitals in India also. Everywhere the doctors explained her that it was not leprosy. But she was not convinced and lastly, she developed depression and was sent to a psychiatrist for management.

 

I think we need to educate the communities about the truths of leprosy to tackle such issues.

 

 

Dr K P Dhakal (Dermatologist/Leprologist, and public health expert)

CD, Netherlands Leprosy Relief

Nepal

 

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LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

(LML) Season’s greetings and 2018

 

Leprosy Mailing List – December 27, 2017

Ref.:    (LML) Season's greetings and 2018

From:  Maria Elena Alonso, Cuba; Pieter Schreuder, the Netherlands

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Apreciado Pieter Schreuder,

Mis felicitaciones en estas fiestas navideñas para usted y todos los colegas que trabajan en Lepra, deseándoles un año 2018 con muchos éxitos profesionales redundando en el beneficio de nuestros pacientes.     

Disculpe la utilización de esta vía para este fin que no es lo adecuado.

Un saludo,

Maria Elena Alonso  

La Habana, Cuba

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Dear colleagues,

 

On behalf of the editorial board of LML, we wish you all a very happy and prosperous 2018. We also thank you for your interest in LML. For the new subscribers, I refer you to the Leprosy Review Editorial for more information about LML: "The leprosy mailing list". Lepr Rev (2012) 83, 331-334.

Presently, we have about 550 email subscribers, excluding those who read our LML blog (http://leprosymailinglist.blogspot.it/). Our readers are from all over the leprosy world: leprosy control field programmes, health centres and hospitals, NGOs and governments, and universities and research institutes. We need to hear all voices and learn from each other, which is one of the objectives of LML.

Grace Warren, our eldest contributor, wrote several letters this year sharing her broad experiences starting from long before MDT; her wise lessons should not be forgotten. Manfred Göbel wrote me a letter showing a child of 4 years with BL/LL leprosy and one of 9 years with both hands affected and both with wrist drop. Joel Almeida warned that in India (and not only in India – editor) the percentage of new patients with grade 2 disabilities is increasing, pointing towards late detection.

Ideally, the percentage of grade 2 disabilities in new patients should be zero, but that aim is currently not achievable. Those who have witnessed devastating reversal reactions in new patients can confirm this. Keeping this under five percent would be marvellous, but rates above 10% are simply not acceptable. We know from experience that official figures (including those from the WHO) are often unreliable and under-report the real situation.

For determining the extent of the problem, the importance of rapid village surveys in (hyper)endemic areas cannot be stressed enough. In low endemic areas, extended contact examinations could be an effective tool. A leprosy control programme can only be run when experienced supervisors and medical doctors are able to travel extensively.

Diana Lockwood pointed out last week that SDR (single-dose Rifampicin) as a preventive measure in contacts is not the solution everybody was hoping for, and even carries serious risks with it. Before SDR becomes the new hype, more research has to be done to address these questions. For the time being, only a well-run control programme supported by community involvement which aims at early case detection and disability prevention – like care groups – would serve the population in endemic areas. New developments are very welcome, but not at the cost of control programmes like what happened after the political hype of the leprosy elimination campaigns (this is my personal assessment and is not necessarily shared by the editorial board).

 

Best wishes,

 

Pieter AM Schreuder

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LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

(LML) Facts in leprosy

Leprosy Mailing List – December 26,  2017

Ref.:    (LML) Facts in leprosy

From:  Ajit P, Mumbai, India

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Respected Sir,

For any infectious disease the outcome depends on the interaction between the host, pathogen, and the environment. For a large part the whole focus of modern medicine has been the pathogen, creating new and effective drugs, etc. Vaccination involves both the host and the pathogen. It strengthens the host. Environment is very important too. Cleanliness of surrounding, sanitation, hygiene, taking care of overcrowding are super important measures. The West "closed the book on infectious diseases" for a large part before these super drugs were discovered. Thanks to improved sanitation and public hygiene. In leprosy control, the earlier we realise that drugs can cure the disease in the individual but for eradication we need other measures like focus on public Dani cleanliness, etc.

In India, honourable prime minister Narendra Modi has since last three years started a national cleanliness drive called "swacch Bharat abhiyan" (clean India campaign).
Among other things it involves tremendous focus on ending open defecation by building large number of toilets and the govt is quite sincerely implementing these measures. This effort at improving the "environment" is absolutely awesome and after some time will yield rich dividends in infectious disease control.

WHO and leprosy control organisations should actively support such measures. All physicians when caring for patients in rural areas or poor socioeconomic class should ask openly if the patient has access to toilets and if not tell them of govt schemes which help communities build toilets. As dermatologists caring for leprosy it is our duty to sensitise our patients of public and environmental cleanliness.

Apart from this honourable prime minister Narendra Modi has also specifically taken up leprosy in pragati ie proactive governance timely implementation platform and undertaken door to door survey which has yielded super results.

Dr Ajit
Dermatologist Bandra West Mumbai

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LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

(LML) Fear from leprosy and lepraphobia

Leprosy Mailing List – December 25,  2017

Ref.:    (LML) Fear from leprosy and lepraphobia

From:  Arry Pongtiku, Papua, Indonesia

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Dear Pieter,

 

Good morning, I would like to add and share about leprophobia. As mentioned in the Kaplan's text book of psychiatry that phobia was included in mental disorders. There are many clinical manifestations. It is caused by panic attack, anxiety, fear, recurrent and of course it is individual/personal response. My experience:

 

1. Leprosy patients who got reaction we usually asked to consul to a dentist for checking dental/ oral as one of trigger factors of reaction. Which was, however, always refused by the dentist and that those patients should be referred to the town for examination. I once visited the health centre and asked to the dentist why she refused to examine: she said leprosy patients are dirty. It sounded like leprophobia. 2. I went with one of the HIV district supervisors to a remote area. We found a man with pruritic skin, weight loss, oral candidiasis and diagnosed as AIDS patient. His wife just passed away. I spoke and touched the patient. However, the supervisor panicked and run away from me.... maybe he has a phobia. Speaking and doing in the field may be different from sitting in an office.

3. In 2003 I was trained as councillor of HIV. After training I practised my knowledge as a volunteer for helping sexual workers and transgender. However, my college already trained refused to join me a few times. He was afraid and maybe he had homophobia.

4. I walked together with a senior researcher and her pen was fallen and I would like to pick up the pen. However, she looked fearful and spoke aloud: throw it away. Finally, she said she had an obsessive- compulsive disorder.

5. I had a foreign guest and we had lunch and dinner together. She did not want to eat meat or chicken with a reason of it is like eating death or decaying body. Her body language showed like she was fearful.

 

My son when he was 6 years old. He suddenly cried out, hysterical after seeing my laptop about leprosy and wound care. I explained that your daddy work for leprosy patients and help people. I always asked my sons and daughter to talk with the disabled, the crimpled, the blind when we meet them. My children have a good developed social and human sensibility.

 

Leprophobia is slightly different from stigma. If patient feels shame and withdraw himself from society it is called self-stigma. If it is happened from family, neighbour or community we called stigma from community.

 

Leprophobia and self stigma need psychiatric or psychological approach. Stigma in community needs health education.

 

Leprophobia and stigma seem more happened in the town than in the rural. It is also affected by cultural and religious background.

 

Leprophobia and stigma not only can be happened in ordinary people but also in health workers.

 

Stigma of leprosy and HIV can be stronger if health workers treat them exclusively. It should be treated inclusively as happened in general.

 

Thank you so much. Have a great season at the end of the year. Wish you a merry Christmas and happy new year.

 

Salam,

 

Arry Pongtiku

Papua -Indonesia

 

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LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 

(LML) Chemoprophylaxis in Leprosy

Leprosy Mailing List – December 24,  2017

Ref.:    (LML) Chemoprophylaxis in Leprosy

From:  Diana Lockwood, London, UK

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Dear Pieter,

I and several other academics working in leprosy have concerns about the recommendation that single dose Rifampicin should be used as chemo-prophylaxis.  These concerns relate to efficacy, the ethics of household contact tracing, likely problems with compliance and the risk of promoting Rifampicin resistance in M. leprae. 

We have written to Erwin Cooreman, Head of the Global Leprosy Programme   and Anil Kumar the Head of the Indian Leprosy programme. We here share the letter with the Leprosy Mailing List. 

We are hoping for a useful discussion.

Best wishes,

Diana

Diana Lockwood

Professor of Tropical Medicine

London School of Hygiene & Tropical Medicine

Keppel St

London WC1E 7HT

diana.lockwood@lshtm.ac.uk

Tel: 020 7927 2457

visit my blog http://dnjtravels.blogspot.co.uk/

 

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LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 

(LML) Infolep Season's Greetings & update of new publications on leprosy

Leprosy Mailing List – December 23,  2017

Ref.:  (LML)  Infolep Season's Greetings & update of new publications on leprosy

From:  Jiske Erlings, Amsterdam, the Netherlands

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Dear Pieter,

Season's Greetings from Infolep! Did you know that the Infolep portal gives you access to over 27,200 publications on leprosy? The purpose of this monthly newsletter is to inform you about recent publications on leprosy and related subjects.  Feel free to contact me to receive the full text versions if a link to the full text is not provided. Assistance with your literature research is also possible. Do you have any leprosy research or training material you would like to share? Please send me an e-mail. Wishing everyone a Merry Christmas and a peaceful new year!  Jiske Erlings, jerlings@leprastichting.nl Infolep Information officer

 

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Highlighted publications

 

 

Ending Neglected Tropical Diseases: A gateway to Universal Health Coverage - Fifth progress report on the London Declaration on NTDs. 2017 Download PDF G-finder 2017: Neglected Disease Research & Development: Reflecting on a decade of global investment Download PDF Leprosy Review - Volume 88, issue 3, October 2017.  Read online

 

 

New publications

 

 

A case of leprosy in central Florida. Anderson KL, Minni JP, Nowak MA, et al. Cutis. 2017 Nov;100(5):327-329. Download PDF    Leprosy in nonimmigrant Canadian man without travel outside North America, 2014. Bonnar PE, Cunningham NP, Boggild AK, et al.  Emerg Infect Dis. 2018 Jan;24(1):165-166. Download PDF   Stigmatization in dermatology with a special focus on psoriatic patients. Dimitrov D, Szepietowski JC. Postepy Hig Med Dosw (Online). 2017 Dec 11;71(0):1115-1122. Read abstract   Genotyping of Mycobacterium leprae for better understanding of leprosy transmission in Fortaleza, Northeastern Brazil. Fontes ANB, Lima LNGC, Mota RMS, et al. PLoS Negl Trop Dis. 2017 Dec 15;11(12):e0006117. Download PDF   Factors associated with the delay of diagnosis of leprosy in northeastern Colombia: a quantitative analysis. Gómez L, Rivera A, Vidal Y, et al. Trop Med Int Health. 2017 Dec 12. Read abstract   The lateral tarsal strip for paralytic ectropion in patients with leprosy. Jue MS, Yoo J, Kim MS, et al. Ann Dermatol. 2017 Dec;29(6):742-746. Download PDF   Increasing virulence in leprosy indicated by global Mycobacterium spp. Levis W, Rendini T, Martiniuk F. Emerg Infect Dis. 2018 Jan;24(1):183a-184. Download PDF   Early human migrations (ca. 13,000 Years Ago) or postcontact Europeans for the earliest spread of Mycobacterium leprae and Mycobacterium lepromatosis to the Americas. Mark S. Interdiscip Perspect Infect Dis. 2017;2017:6491606. Download PDF   Increased activated memory B-cells in the peripheral blood of patients with erythema nodosum leprosum reactions. Negera E, Walker SL, Bekele Y, et al. et al. PLoS Negl Trop Dis. 2017 Dec 18;11(12):e0006121. Download PDF   Historical perspectives on leprosy control in Nigeria: problems and prospects. Okeke T, Nwankwo IU. International journal of health and social inquiry. 2017; 3(1):141-151. Download PDF   A study of early post-operative active mobilization in tibialis posterior tendon transfer for foot drop correction in leprosy patients-a surgical anatomy prospective. Pattnaik A, Giri SK, Haldar A, et al. International Journal of Medical and Health Research. 2017; 3(11):22-24. Download PDF   Longitudinal assessment of anti-PGL-I serology in contacts of leprosy patients in Bangladesh. Richardus RA, van der Zwet K, van Hooij A, et al. PLoS Negl Trop Dis. 2017 Dec 11;11(12):e0006083. Download PDF   Active leprosy neuritis detected on FDG PET/CT. Roy SG, Parida GK, Tripathy S, et al. Clin Nucl Med. 2017 Dec 19. Read abstract   Leprosy as a complex infection: breakdown of the Th1 and Th2 Immune paradigm in the immunopathogenesis of the disease. de Sousa JR, Sotto MN, Simões Quaresma JA. Front Immunol. 2017 Nov 28;8:1635. Download PDF   Physical disability degree in the elderly population affected by leprosy in the state of Bahia, Brazil. de Souza CDF, de Fernandes TRMO, Matos TS, et al. Acta Fisiatr. 2017; 24(1):27-32. Download PDF   Evaluation of the economic burden of leprosy among migrant and resident patients in Guangdong Province, China. Xiong M, Li M, Zheng D, et al. BMC Infect Dis. 2017 Dec 11;17(1):760. Download PDF   Amino acid variants of HLA-DRB1 confer susceptibility to dapsone hypersensitivity syndrome in addition to HLA-B*13:01. Yue Z, Sun Y, Wang C, et al. J Invest Dermatol. 2017 Dec 9. Read abstract

 

 

Journals & Newsletters

 

 

Disability, CBR & Inclusive Development: http://dcidj.org/ Hansenologia Internationalis: http://www.ilsl.br/revista/atual.php Indian Journal of Leprosy: http://www.ijl.org.in/index.html  Leprosy Review: https://www.lepra.org.uk/Pages/FAQs/Category/volume-88 Leprosy Review Repository (1928-2001) : http://leprev.ilsl.br/arquivo.php Plos Neglected Tropical Diseases: http://journals.plos.org/plosntds/   Revista de Leprología: http://www.leprosy-information.org/resource/revista-de-leprologia   WHO Goodwill Ambassador's Newsletter for the elimination of leprosy: http://www.smhf.or.jp/e/ambassador/index.html

 

 

Websites & Services

 

 

Global Leprosy Programme http://www.searo.who.int/entity/global_leprosy_programme/en/ LML - Leprosy Mailing List - a free moderated email list that allows all persons interested in this theme to share ideas, information, experiences and questions. http://leprosymailinglist.blogspot.nl/ InfoNTD - Information on cross-cutting issues in Neglected Tropical Diseases (NTDs) https://www.infontd.org/

 

 

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LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com