Fw: Ref.: (LML) WHO Goodwill Ambassador's Leprosy Bulletin NO. 110, August 2022

 

 
Leprosy Mailing List – August 10,  2022

 

Ref.: (LML) WHO Goodwill Ambassador's Leprosy Bulletin NO. 110, August 2022

 

From:  Takahiro Nanri, Tokyo, Japan

 

Dear Dr. Schreuder and Friends,  

 

Warm greetings from Sasakawa Health Foundation/Sasakawa Leprosy (Hansen's Disease) Initiative in Tokyo. We have issued WHO Goodwill Ambassador's Leprosy Bulletin NO. 110 August 2022 "Don't Forget Leprosy" throughout the world. In this issue, we feature: 

 

MESSAGE FROM THE AMBASSADOR
When I heard that a friend of mine in Nepal was planning to climb Mt. Everest in May this year, I had the idea to ask him to have his photograph taken at the summit with the message "Don't Forget Leprosy."  Read More 

 

INITIATIVE NEWS

Survey projects supported as part of Don't Forget Leprosy campaign send in reports  

Sasakawa Leprosy (Hansen's Disease) Initiative has been running a campaign called "Don't Forget Leprosy" since August 2021 to send the message that leprosy must not be overlooked amid the COVID-19 pandemic.  Read more 

 

REPORT
Persons affected by leprosy in Indonesia investigate possible human rights violations - PerMaTa South Sulawesi

As a stigmatized disease, leprosy affects all aspects of a person's life, and experiences with social marginalization and discrimination can continue long after the disease has been cured. Read more 

 

REPORT
Survey of persons affected by leprosy and their family members in India's Chandrapur and Gadchiroli districts - Saksham Kushthanteya Swabhimani Sanstha (SKSS), India
Between January and May 2022, Saksham Kushthanteya Swabhimani Sanstha (SKSS), a community-based organization of persons affected by leprosy, carried out a project to collect data on the impact of leprosy and... Read more 

 

LETTER
Experience as a research project officer changed my life - Nwanneka Udoye, Research Assistant, RedAid Nigeria

My name is Nwanneka Udoye, and I am a 42-year-old female science laboratory technology graduate. I live in Enugu, Nigeria. I am a person affected by leprosy, and I have had struggles with stigma and discrimination. Read more 

 

VIEWPOINT
The Abidjan Declaration: Commitment to Zero Leprosy in Côte d'Ivoire - Bill Gallo, Secretariat Director, Global Partnership for Zero Leprosy (GPZL)
In the first week of June, the National Leprosy Programme of Côte d'Ivoire hosted meetings to mobilize the resources needed to end leprosy in the country by 2030.  Read more

 

REPORT
COSP15 side event on participation of persons with invisible and neglected disabilities in climate action and disaster risk reduction - Ashish Shukla, Communications Manager, Disabled Peoples' International (DPI)
In conjunction with the 15th session of the Conference of States Parties (COSP15) to the Convention on the Rights of Persons with Disabilities (CRPD), Disabled Peoples' International (DPI) partnered with the Sasakawa Health Foundation (SHF) to hold an online side event on June 16, 2022. Read more 

 

SPOTLIGHT
Ikoli Harcourt Whyte's songs to be published in dual notation with lyrics in English translation

Nigeria's best-known person affected by leprosy, Ikoli Harcourt Whyte (1905-1977), received his diagnosis in 1914, when lack of treatment was expressed in the Igbo saying: "Onwu bu Ogwu ya (Death is its cure)." Read more 

 

BACK ISSUES 
We hope that you would enjoy reading the latest Leprosy Bulletin. 

 

Takahiro NANRI, Ph.D.
Executive Director, Sasakawa Health Foundation

 

*********************************************************
Sasakawa Leprosy (Hansen's Disease) Initiative
Sasakawa Health Foundation
Tel：81-3-6229-5377, Fax：81-33-6229-5388
email: hansen@shf.or.jp
website: https://sasakawaleprosyinitiative.org/,  https://www.shf.or.jp

Subscribe our email newsletter

  

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

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

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

 

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Fw: Ref.: (LML) Infolep monthly overview of new publications on leprosy - Aug '22

 

 
Leprosy Mailing List – August 4,  2022

 

Ref.:  (LML) Infolep monthly overview of new publications on leprosy - Aug '22

From:  Anniek Akerboom, Amsterdam, the Netherlands

 

Dear colleagues, 

Infolep has been working together with the Global Partnership for Zero Leprosy to create the first in a series of factsheets summarising major topics in leprosy research. We are happy to announce that the first one-page factsheet on SDR-PEP (post-exposure prophylaxis) is now available >>. The factsheets will become available in English, French, Portuguese and Spanish.

I would like to inform you that this is my last day working as the Infolep Coordinator as I will continue my career at another organisation. I really enjoyed managing Infolep and being of service to all of you. Thank you for your appreciation over the past 2 years, that made my work even more valuable. The upcoming newsletters will be shared by my successor. If you would like to receive a full-text version of a publication or need assistance with literature searches on Infolep, please contact info@infolep.org.

Enjoy reading the latest publications on leprosy.

Wishing you all the best,

Anniek Akerboom

Infolep Coordinator
www.leprosy-information.org
a.akerboom@infolep.org
 

 

 

Highlighted

 

Factsheet on SDR-PEP: The latest research on single-dose rifampicin post-exposure prophylaxis
Global Partnership for Zero Leprosy, Infolep. 2022.
 

Online Course - Leprosy: epidemiology, pathology, immunology, prevention of disability and stigma
Lockwood DN. HS Talks. 2022.
 

Online Course - Leprosy: clinical features and treatment
Lockwood DN. HS Talks. 2022.
 

RehApp 2.0 Mobile app - Rehabilitation Knowledge Base for fieldworkers
Enablement. 2022.
 

A Guide to Improving MDA Using Qualitative Methods
Fitch E, Krentel A, Bardosh K, et al. RTI International. 2021.
 

 

 

Leprosy & COVID-19

 

COVID-19 and Neglected Diseases in the face of inequalities in Brazil: a matter of sustainable development
Diniz DS, Teixeira EDS, Almeida WGRD, et al. FapUNIFESP (SciELO). Saúde em Debate. 2021; 45 (spe2) : 43-55.

 

 

New publications

Feel free to contact me to receive full-text versions if these cannot be found through the Infolep portal.

 

Multibacillary leprosy with an incubation period exceeding 50 years.
Taggart M, Kelly A, Stell R, et al. BMJ case reports. 2022.
 

Regulatory T cells in erythema nodosum leprosum maintain anti-inflammatory function.
Negera E, Bobosha K, Aseffa A, et al. PLoS neglected tropical diseases. 2022; 16 (7) : e0010641.
 

Investigating drug resistance of Mycobacterium leprae in the Comoros: an observational deep-sequencing study.
Braet S, Jouet A, Aubry A, et al. The Lancet. Microbe. 2022.
 

The Armadillo as a Model for Leprosy Nerve Function Impairment: Preventative and Therapeutic Interventions.
Pena M, Lahiri R, Ebenezer G, et al. Frontiers in medicine. 2022.
 

Forecasting models for leprosy cases: a scoping review protocol.
Ascef B, de Oliveira G, Coriolano C, et al. BMJ open. 2022; 12 (7) : e062828. 
 

Leprosy: A Review of Epidemiology, Clinical Diagnosis, and Management.
Chen K, Lin C, Bin Su S, et al. Journal of tropical medicine. 2022.
 

Peripheral neuropathy in leprosy: Clinical manifestations and disability in a Colombian national referral center.
Trujillo-Ramirez L, Palacios-Ariza M, Pradilla I, et al. Dermatology reports. 2022; 14 (2) : 9308. 
 

Early detection of sensory nerve function impairment in leprosy under field conditions
John AS, Govindharaj P. Scientific Scholar. Indian Journal of Dermatology, Venereology and Leprology. 2022.
 

An evidence and reasoning based differential diagnosis of a case of leprosy reinfection from reaction and relapse.
Kumar V, Arora M, Gupta V, et al. Indian journal of medical microbiology. 2022.
 

Case Report: A Case Series of Immunobiological Therapy (Anti-TNF-α) for Patients With Erythema Nodosum Leprosum.
Mendes A, Gomes C, Kurizky P, et al. Frontiers in medicine. 2022.
 

High prevalence of resistance to anti-leprosy drugs in leprosy cases with chronic erythema nodosum leprosum: A matter of concern
Jindal R, Singh I, Bhardwaj S, et al. Medknow. Indian Dermatology Online Journal. 2022; 13 (4) : 511.
 

Neuropathic ulcers in leprosy: clinical features, diagnosis and treatment.
Serrano-Coll H, Cardona-Castro N. Journal of wound care. 2022; 31 (Sup6) : S32-S40.
 

Transmission features of Mycobacterium leprae throughout the decline of leprosy incidence
Shukla R, Seth D, Shukla A, et al. Universidad Tecnica de Manabi. International journal of health sciences. 2022.
 

Leprosy is down but not yet out: new insights shed light on its origin and evolution
Roberts C, Scollard DM, Fava VM. Oxford University Press. Palaeopathology and Evolutionary Medicine. 2022.
 

Epidemiological features of leprosy in China, 2020
Jia-Yi P, Sun P, Wang L, et al. Ovid Technologies (Wolters Kluwer Health). International Journal of Dermatology and Venereology. 2022.
 

Ma'i Lepera : Representation of Leprosy in selected Hawai'ian-American Literature
Indriyanto K. Petra Christian University. k@ta. 2022; 24 (1) : 1-10.
 

Hanseníase: um problema além da cura
Silva ACMD, Jesus CSD, Dias AK, et al. Research, Society and Development. Research, Society and Development. 2022; 11 (9) : e14611931660.
 

A Historical Study of Leprosy Control Policies in Western Nigeria, 1896-1945
Onobhayedo AO. KIU Journal of Humanities. 2022; 7 (2) : 71-78.
 

Análise do perfil clínico e epidemiológico de hanseníase em menores de 15 anos nos últimos 10 anos em um município localizado no sudoeste do Maranhão
Carvalho MLDS, Carvalho MLDS, Oliveira IRN, et al. Revista Eletronica Acervo Saude. Revista Eletrônica Acervo Saúde. 2022; 15 (7) : e10641.

 

Landscape analysis of NTD diagnostics and considerations on the development of a strategy for regulatory pathways
Choi HL, Ducker C, Braniff S, et al. PLOS Neglected Tropical Diseases. Public Library of Science (PLoS). 2022; 16 (7) : e0010597. 
 

Correction of ulnar claw hand – A comparative study of extensor carpi radialis longus (ECRL) and flexor digitorum superficialis (FDS) as the motor unit of choice
Sajid I, Ahmad S. Lepra. Leprosy Review. 2022; 93 (2) : 102-114. 
 

Right to health and Hansen's disease: the voice of girls and women affected by Hansen's disease
Brandão PS, Duarte NIG, Soares PG, et al. Lepra. Leprosy Review. 2022; 93 (2) : 161-165.
 

Sensitivity of different DNA extraction methods and PCR to detect resistance in patients with leprosy stratified by the bacilloscopic index.
Sevilha-Santos L, Aquino D, Neto G, et al. The Brazilian journal of infectious diseases : an official publication of the Brazilian Society of Infectious Diseases. 2022; 26 (4) : 102381.
 

Hansenapp: Development of a mobile application to assist primary healthcare providers to control leprosy.
Matos D, Torres M, da Silva L, et al. Tropical medicine & international health : TM & IH. 2022.
 

A Five Year Retrospective Study of Profile of Leprosy Patients in a Teaching Tertiary Care Centre in Uttarakhand
Joshi K, Rizvi G, Kaushik A, et al. Indian Journal of Leprosy. 2022.
 

Quality of Life in Patients with Leprosy using WHOQoL-Bref Questionnaire: A Pilot Study
Pai VV, Vhora S, Shukla P, et al. Indian Journal of Leprosy. 2022.
 

Video-dermoscopic Assessment of Capillaroscopic Pattern in Hansen's Disease
Sudhakar Rao KM, Smitha SV, Aruna MS, et al. Indian Journal of Leprosy. 2022.
 

Validação de um instrumento simples e de aplicação rápida para rastrear incapacidade em pacientes com hanseníase
Pinho AB, Freitas MMD, Fontes CJF. Georg Thieme Verlag KG. Revista Brasileira de Ortopedia. 2022.
 

Nasal septal perforation in advanced lepromatous leprosy: A report of two cases with endoscopic findings.
Sambangi J, Prabhakaran N, Annam C, et al. Tropical doctor. 2022.
 

Leaving no one behind. A qualitative study about the accessibility of leprosy healthcare services
Lemmens L. Vrije Universiteit Amsterdam. Athena Institute. 2022.
 

A Bibliometric Analysis of Leprosy during 2000-2021 from Web of Science Database.
Li X, Yang J, Zhang L, et al. International journal of environmental research and public health. 2022.
 

Incidencia de lepra en el municipio santa cruz del sur, Cuba. treinta años de estudio
Delgado RME, Curra Buitrago IC, Bárzaga IO, et al. Revista de leprología. 2022; 33 (3) : 171-186. 
 

Ventajas de administrar dosis altas de clofazimina
Butlin CR, Maghanoy AA. Revista de leprología. 2022; 92 (4) : 427-432. 
 

Prevalencia y factores de riesgo para discapacidades de grado 2 entre los niños y adolescentes recién diagnosticados de lepra: un análisis basado en las historias clínicas de la India
Upputuri B, Vulchi N, Singh R, et al. Revista de leprología. 2022; 93 (1) : 79-88.
 

Design of a specific peptide against phenolic glycolipid-1 from Mycobacterium leprae and its implications in leprosy bacilli entry.
Arenas N, Pieffet G, Rocha-Roa C, et al. Memorias do Instituto Oswaldo Cruz. 2022.
 

Definition of 'close contacts' in leprosy studies: protocol for a scoping review
Ronse M, Nieto-Sanchez C, De Coninck S, et al. F1000 Research Ltd. 2022.
 

Fisiopatologia da hanseníase: resposta imunológica relacionada às formas clínicas
Yonemoto ACF, Choptian Júnior MC, Mattara VADO, et al. Research, Society and Development. Research, Society and Development. 2022; 11 (9) : e42211932058.

 

 

 

Events

 

COR-NTD Research Review: Peer Support Models for NTDs
26 July | Recording
 

NNN Conference
13-15 Sep 2022
Kathmandu & Virtual
 

 

COR-NTD Annual Meeting 2022
4 - 5 Oct | Virtual
 

21st International Leprosy Congress
8-11 Nov 2022
Hyderabad & Virtual

 

 

Links

 

Info Hansen - A innovative hub for knowledge sharing about Hansen's Disease
 

ALLF - Official website of the Association des Léprologues de Langue Française
 

LML - Leprosy Mailing List - a free moderated email list that allows all persons interested in leprosy to share ideas, information, experiences and questions
 

InfoNTD - Information on cross-cutting issues in Neglected Tropical Diseases (NTDs)

 

ILEP newsletter archive

GPZL newsletter subscription

WHO Goodwill Ambassador's Leprosy Bulletin

Leprosy Review

Leprosy Review Repository (1928-2001)

Fontilles Revista de Leprología

Indian Journal of Leprosy

Hansenologia Internationalis

 

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Infolep will only process the data we have (names, email addresses) for the purpose of sending you the newsletter. We take your security seriously and will never share your contact details with anyone else.

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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

 

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Fw: Ref.: (LML) LML sessions at ILC 2022

 

Leprosy Mailing List – July 30,  2022

 

Ref.:  (LML) LML sessions at ILC 2022

 

From:  Santoshdey Rathod, Ahmedabad, India

 

Dear colleagues,

 

To me this question seems to be most relevant:

 

'Are ILEP members by their effort to raise money not increasing the stigma? How do you raise the money needed for care when the WHO and governments fail?'

 

Just a context: "How a beggar uses his deformity to demand money on the street". When we as  learned members 'talk and discuss about stigma'. Most of the times; unknowingly we are accepting and encouraging more stigma towards a leprosy affected person.

 

'Stigma' should not be a 'leveraging tool' for generating funds. There has to be/should be  healthy ways to generate funds for NGOs and related organisations.

 

1. We can do comparative analyses of money spent on other infectious diseases, say 'HIV' and/or 'Tuberculosis'.

2. Economic loss to the PAL is well studied and prevention of this Economic loss could be highlighted.

3. It is more about owning up responsibility of leprosy care by the governments as have seen recent government involvement in COVID 19 illness. 

4. We have to accept and show the truth that 'Leprosy is still a concern and not an eliminated disease.'

 

I am posting these suggestions in good faith and kudos to the people who thought of this question because this aspect needs to be discussed.

 

Humble regards,

 

Dr. Santoshdev Rathod

Deputy Medical Superintendent, SCL General Hospital

Professor of Dermatology, Smt . NHL MMC, Ahmedabad

Joint Scientific Secretary, ILC 2022.

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

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

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

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Fw: Ref.: (LML) Registration of persons affected by leprosy in ILC 2022

 

Leprosy Mailing List – July 29,  2022

 

Ref.:  (LML) Registration of persons affected by leprosy in ILC 2022

From:  P. Narasimha Rao, Hyderabad, India

 

Dear Pieter,

 

Thank you for publishing the information about the ILC registrations to persons affected by leprosy in LML.   We are already getting responses/ queries  from many organisations.   

 

But unfortunately,  the excel sheet attachment was missing in that email. Hence, in the same thread, I request you to share this excel sheet format to all our readers, so that they can send the information in the desired format needed to proceed further. 

 

Please find the  revised excel sheet attached herewith.  Hope it will be possible. 

 

Thanks and regards. 

 

P. Narasimha Rao, MD, D.D, PhD

 

Organising Secretary, 21st International Leprosy Congress. 2022

President, Indian Association of Leprologists (IAL) 

Past President, National IADVL- 2019

Coordinator, SIG-NTD, IADVL 2021-23

 

Professor of Dermatology, 

Bhaskar medical college,

Hyderabad, India

 

Mobile-+91-9849044898

Email: dermarao@gmail.com

www.ial-leprosy.org

www.ilc-india2022.com

 

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

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

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

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Fw: Ref.: (LML) LML sessions at ILC 2022

 

Leprosy Mailing List – July 29,  2022

Ref.:  (LML) LML sessions at ILC 2022

From: Editorial Board LML, Maastricht, the Netherlands

 

Dear Ben, Sunil, Salvatore and Pieter,

 

Thank you for the LML mail of July 29th.

 

For the topics to be discussed you have already listed a number.

 

Please forgive me to suggest to re-formulate some of these:

 

• Are patients having unhampered access to proper leprosy care at health clinic and hospital level.
• Is the level of knowledge offered at these institutes adequate for (1) an early and correct diagnosis of leprosy, (2) for the early detection and treatment of neuritis and immune reactions / relapse, (3) the treatment and prevention of ulcers and deformities?
• Neuritis;  State of the Art; any progress made in its treatment since the last ILC?
• The need for (sample?) surveys in former highly endemic areas.  

 

With best wishes,

 

Wim Theuvenet

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

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

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

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Fw: Ref.: (LML) LML sessions at ILC 2022

 

Leprosy Mailing List – July 29,  2022

 

Ref.:  (LML) LML sessions at ILC 2022

 

From:  Editorial Board LM, Maastricht, the Netherlands

 

Dear colleagues,

Compared to even ten years ago, the governments are playing a much bigger role in leprosy control while the role played by ILEP associations has decreased and seems to be steadily decreasing. Organizations of affected persons are there but they mostly represent decreasing numbers of old disabled patients, while the new affected persons have less disabilities and lack the "leprosy identity", so often they do not wish to join them. 

Even ILEP associations are depending upon the governments in Europe to fund their work and most of the funding comes for NTDs or combined programs while few leprosy-only projects get any institutional funding. All these factors combined mean that their impact on influencing government policies and programs has decreased and is decreasing. In this scenario, the best way to influence governments is through professionals and through WHO. Bodies like ILA, as well as discussion forums like LML, play an important role in this situation.

For the LML session on the ILC in Hyderabad, a number of proposals have been received. All are very worthwhile to discuss. 

• Quality of clinical care during treatment and particularly after treatment; too many continue to deteriorate after being diagnosed. 
• In this context. the financing by governments and NGOs should be addressed.  
• The representation of leprosy patients.  Who and what do they represent? 
• Are ILEP members by their effort to raise money not increasing the stigma? How do you raise the money needed for care when the WHO and governments fail? 
• Epidemiology: why does the present approach not work?  
• What can be said about the Skin STD approach proposed by WHO? 

 

Our proposal is to prepare more detailed questions on the above-mentioned points, collect answers (including observations and experiences) and ask experts to debate. 

LML will have a formal one-hour session during the regular physical/virtual ILC 2022 congress. A more informal session would be welcome for example in the evening or just before the congress.  

Considering our discussion points, we have to consider how we could make optimal use of the time available.  

Are there any comments (suggestions) among the LML readers? Which points are the most important? 

 

 

Best regards,

 

 

Ben Naafs

Sunil Deepak

Savatore Noto

Pieter Schreuder

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

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

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

 

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Fw: Ref.: (LML) Problems encountered in the field

 

Leprosy Mailing List – July 28 ,  2022

 

Ref.:  (LML) Problems encountered in the field

From: Kerstin Beise and Al Kadri, PerMaTa South Sulawesi – YDTI, Makassar, Indonesia

 

Dear Pieter,

Referring to the inquiry by Joseph Kawuma, Kampala, Uganda (LML, 26-07-2022), whether instances of neglect are the result of a systematic investigation or survey.

All information we have about lack of services after RFT are the results of home visits by the PerMaTa South Sulawesi-YDTI to persons affected by leprosy after RFT, based on information from the health centres and supported by international donors as part of other project activities. They are not the result of a systematic investigation.

We have been looking for funds for such an investigation for a long time, but so far without success. We believe that the lack of data is one of the reasons for the lack of services. If you are interested, Joseph, I am happy to share a research proposal that we have written in this regard (contact us under ydti.info@gmail.com).

Thank you for your support and interest.

Kind regards,

Kerstin Beise, Al Kadri

 

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

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

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

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