Fw: Ref.: (LML) Graded nylon monofilaments for sensory assessment in leprosy. Available in protective containers, at no cost to the interested party

 

 

Leprosy Mailing List –  July 6,  2025

 

Ref.:  (LML) Graded nylon monofilaments for sensory assessment in leprosy. Available in protective containers, at no cost to the interested party

From:  Robert Jerskey, Carlsbad, USA

 

 

Dear Pieter and colleagues,

I have a sizable stock of carefully packaged loose, graded nylon monofilaments ---a big thanks to Elizabeth Voelker [formerly Elizabeth Tomancik, colleague of the late pioneering OT, Judith Bell-Krotoski who championed their utility in the field of leprosy] for donating them--- for distribution to the interested NGO, govt organization, or individual in the field of leprosy who is present during the Congress, for methodical use in the clinic. 

A file with suggested guidelines and recommendations, as well as precautions, to be available.

Thanks to multiple LML postings --this year alone—for exhorting readers to recognize: the vital importance of identifying early nerve function impairment, e.g., Linda Lehman & Pieter Schreuder's May 30^th post, as well as the reality of the pervasiveness of "silent neuropathy", e.g., Joel Almeida's and Ben Naafs' February posts.

Closing here with friendly greetings to fellow colleagues of the LML, my ongoing appreciation for LML (established during the previous ILC in Hyderabad in 2008?) as an enduring online beacon in the field of leprosy, and my gratitude to the dedicated team of organizers of the ILC Bali.

See email address below for contact. 

Respectfully,

Robert Jerskey

robjerskey@yahoo.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) LRI at ILC 2025, Annual Report 2024 & Featured research

 

 

Leprosy Mailing List –  July 4,  2025

 

Ref.:  (LML)  LRI at ILC 2025, Annual Report 2024 & Featured research

From: Leprosy Research Initiative, Amsterdam, the Netherlands

 

 

Dear colleagues,

 

LRI goes to ILC 2025

The International Leprosy Congress (ILC) is a major global event held every three years, bringing together researchers and key stakeholders in the field of leprosy. Next week, from July 7 to 9, the 22nd ILC will take place in Bali, Indonesia, uniting participants from around the world to share knowledge, connect, and collaborate toward a world free from leprosy. This year's theme, "Towards a World with Zero Leprosy", reflects our shared commitment to elimination.

The ILC is a key global forum for advancing research, treatment, and understanding of leprosy (Hansen's disease). It offers a valuable space for researchers, health professionals, policymakers, and persons affected to engage with the latest developments in the field.

The LRI Secretariat will be present at the LRI booth, and we warmly invite all researchers, committee members, partners, and anyone interested to stop by and learn more about our work. Visit us to exchange ideas and hear more about LRI's research, upcoming funding opportunities, capacity-strengthening initiatives, and other exciting developments.
 

LRI-supported research will also be strongly represented in the scientific programme - with nearly 30 oral and poster presentations showcasing the progress and impact of our funded projects. Find more information on all presentations at the LRI booth.

We look forward to meeting many of you in person at the Congress!

 

LRI-funded projects featured in TLM's Research Magazine

One of LRI's partner organisations, The Leprosy Mission International (TLMI), publishes its online Research Magazine twice a year, reaching readers across the leprosy and NTD sectors. The magazine offers in-depth insights into TLM's research projects, their progress, and the potential impact of their findings.

The July 2025 issue features two LRI-funded projects -"PEP4LEP" and "Audio and written interventions to improve the perception of leprosy"- offering a great opportunity to share their work with a broader audience.
📰 Read more about the projects here here

We are pleased to see LRI-supported research gaining visibility and recognition. A big thank you to Tim Burton, TLMI's Global Communications Lead, for coordinating this effort.

Both projects will also be represented at the International Leprosy Congress in Bali, Indonesia through oral and poster presentations. We look forward to hearing more about their findings and impact during the event.

 

LRI Annual report 2024

We are pleased to share LRI's Annual Report for 2024, highlighting the work and activities undertaken throughout the year. From launching new projects and grants to strengthening skills and sharing knowledge across our network, each step contributes to our long-term goals.

We're grateful to everyone who has been part of this journey.
📄 Read the full 2024 Annual Report here

Thank you to all our partners, committee members, researchers and external reviewers for your continued dedication. We look forward to building on this momentum in the years ahead!

________________________________________________________________________________

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) WHO Goodwill Ambassador's Leprosy Bulletin NO. 127, June 2025

Leprosy Mailing List – July 4,  2025

 

Ref.:  (LML) WHO Goodwill Ambassador's Leprosy Bulletin NO. 127, June 2025

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.127 June 2025 "Leprosy should not be a silent disease." In this issue, we feature: 

 

MESSAGE FROM THE AMBASSADOR
From May 20 to 23, 2025, I attended the 78th World Health Assembly held in Geneva, Switzerland. This year marks the 50th anniversary of support from The Nippon Foundation and the Sasakawa Health Foundation (TNF/SHF) for WHO's leprosy elimination efforts. Read More 

 

VIEWPOINT
How the rights of persons affected by leprosy have been brought to public attention in Nepal

Krishna Man Pradhan, Executive Director, Nepal Law Society

In Nepal, approximately 200,000 individuals are currently affected by leprosy, with over 2,500 new cases reported annually. The Government of Nepal has committed to achieving a leprosy-free nation by 2030. Read more

 

VIEWPOINT
Participants reflect on Nepal Leprosy Conference, held in Kathmandu on May 8–9, 2025

Amar Bahadur Timalsina, Global Network Coordinator, IDEA International

Dinesh Basnet, President, IDEA Nepal

Taranath Sigdel, Secretary, National Leprosy Affected Welfare Association (NLAWA) 

Nathuni Sah, Facilitator, Gourishankar Self-Help Group, President, Sarlahi District Self-Help Group

 "Attending the historic Nepal Leprosy Conference 2025 was both inspiring and deeply moving. Witnessing the unified commitment of national leaders, experts, the Prime Minister of Nepal,... Read more 

 

REPORT
Young leaders affected by Hansen's disease reach for their dreams with mentors' support in Colombia

Contributed by the Felehansen mentor team for the Sasakawa Leprosy (Hansen's Disease) Initiative Young Scholar Program in Colombia, pilot year April 2024–March 2025 Read more

 

REPORT

Sasakawa Leprosy Initiative Young Scholar Program: Experiences and lessons learned in Indonesia

Contributed by the PerMaTa South Sulawesi–YDTI mentor team for the Sasakawa Leprosy (Hansen's Disease) Initiative Young Scholar Program in Indonesia, pilot year April 2024–March 2025 Read more

 

AMBASSADOR'S JOURNAL
Goodwill Ambassador Sasakawa attends conference in Nepal and World Health Assembly in Switzerland
In May, WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa participated in the Nepal Leprosy Conference 2025 held in Kathmandu (May 8–9) and met with health ministers from various countries and senior WHO officials during the 78th World Health Assembly in Geneva, Switzerland (May 19–27). Read more 

 

INITIATIVE NEWS
Representatives from Nepal, Indonesia, and Bangladesh speak at academic conference
The Sasakawa Leprosy (Hansen's Disease) Initiative recently supported representatives of organizations of persons affected by leprosy from Nepal, Indonesia, and Bangladesh as well as representatives of their local NGO partners to speak at the 13th ISTR Asia-Pacific Regional Conference held on the University of the Philippines campus in Cebu. Read more 

 

BACK ISSUES 

 

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

 

 

Takahiro NANRI, Ph.D.
President, 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

*********************************************************

________________________________________________________________________________

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

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

Contact: Dr Pieter

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Fw: Ref.: (LML) Epidemiology & an Abstract

Leprosy Mailing List –  June 30,  2025

 

Ref.:  (LML) Epidemiology & an Abstract

From: Joel Almeida, Mumbai, India

 

 

 

 

 

 

Dear Pieter and colleagues,

 

An overview might be useful of the epidemiology of HD and key intervention points.

Once LL HD patients are reliably diagnosed and protected it is like turning off a tap. The flood of viable bacilli stops. Would it be wrong to say that most if not all the problems flow from that open tap?

Re Safe & effective interventions, an abstract of a recently published paper:

"This is a quantitative analysis of data concerning visible deformity among newly diagnosed Hansen's disease - HD (leprosy) patients in Dadra Nagar Haveli, India, before and after the introduction of chemoprophylaxis. Chemoprophylaxis was introduced on 1 April 2015 and consisted of a rifampicin dose >10 mg/kg for contacts of nearly all "primary" patients who were newly diagnosed from 1 April 2013 until 2017. The population had repeated door-to-door surveys in the two years before the introduction of chemoprophylaxis. Data was extracted from published sources.

The variation in the annual number of newly diagnosed HD patients with visible deformity in this population in any given year was predictable to the extent of over 90% by the number of contacts in this population who had received chemoprophylaxis in the preceding year (p =.0002, R2 = 0.9132). The population incidence rate of newly detected visible HD deformity at HD diagnosis increased substantially, from <2/million population/yr during 2010 to 2014 to >60/million population/yr in 2016, the year following the 2015 introduction of chemoprophylaxis.

The evidence suggests that brief chemoprophylaxis among asymptomatic contacts of newly diagnosed HD patients was an important factor in the causation of visible deformity among newly diagnosed HD patients in this population. Biological plausibility is discussed. 

 

By contrast, the frequency of visible HD deformity typically declines between the start and end of full MDT treatment backed by a package of nerve function monitoring and holistic care. Consequently, it is recommended that the underlying biology of visible deformity after brief chemoprophylaxis be elucidated further by non-human experiments before exposing more people in endemic countries to the risks of brief chemoprophylaxis. This will help protect the limbs and eyes of family members and other contacts of persons who experience(d) HD."

With all sincerity,

Joel Almeida

Reference

Almeida JG, Talhari S, Salgado CG, Kumar B, Talhari C, Gonçalves HdS (2025). Visible Deformity after HD (Leprosy) Chemoprophylaxis among Tribal People in India: Quantitative Analysis of Data Extracted from Published Sources. Indian J Lepr. 97: 175-188.

 

PS Many interesting articles in the same Apr-June 2025 issue of Indian J. Lepr,  including

KR Pilaka, MS Pallapati, M Simic, DNJ Lockwood, A Srikantam
Revisiting the Eye-Hand-Foot Score as a Simple Tool in Assessing the Disability Progression in Leprosy Patients in India

KS Baghotia, PSS Rao
Spatiotemporal Changes of Leprosy in the 11 Districts of National Capital Territory of Delhi, India

S Surve, SV Gitte, R Adkekar, S Khera
Investigating the Changing Landscape of Leprosy Cases and Geospatial Analysis: A Study of High and Low Endemic Districts in Maharashtra, India

Katoch VM
Research on Deformities/Disabilities in Leprosy Needs to Focus on Improving the Outcomes. 

________________________________________________________________________________

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) Widening the pool of talent

 

Leprosy Mailing List –  July 25,  2025

 

Ref.:  (LML) Widening the pool of talent

From: Joel Almeida, Mumbai, India

 

 

Dear Pieter and colleagues,

Cutting-edge R&D is becoming more widespread. For example, AI use by Chinese researchers for drug development.

https://www.nature.com/articles/s41467-025-59870-4

In 2024, the Nobel Prizes in Physics and Chemistry respectively were awarded to researchers whose work also heavily relied on AI. AI tends to shorten the half-life of errors in fact or logic.

In 2003, the Indian Council of Medical Research (ICMR), the Oswaldo Cruz Foundation in Brazil, the Kenyan Medical Research Institute (KEMRI), the Malaysian Ministry of Health, and the Institut Pasteur of France, with the participation of WHO/TDR, had teamed up with MSF to found the Drugs for Neglected Diseases initiative (DNDi).  It has discovered useful molecules.

India, Brazil, Indonesia, China, African countries, among others, are all rich in talent. As HD control moves towards more prompt and reliable diagnosis, more insightful epidemiological/ immunological/ microbiological understanding, and more rapidly effective interventions, the pool of talent and ideas can steadily widen. The centre of gravity can shift towards endemic countries, so that the best talent there perceives HD to be a fascinating field of research, even if it may be viewed only as a stepping-stone to other fields of research.

Our envisioned future can be more closely tied to fact and logic. We can imagine a health worker taking nasal swabs from a random sample of people in workplaces or marketplaces, for rapid semi-quantitative detection of astronomical quantities of bacillary DNA (as occur in LL HD). Immunological approaches to dealing with the hyper-susceptibility of some persons with LL-type genomes. Drugs with few or no unintended effects. Interventions that reduce the risk of inflammation in and around nerves. Better assistive and rehab devices for the millions who live with the sequelae of HD. The use of automated simultaneous translation to overcome language barriers. And more still, even as we make the most of what currently works best.

Some unexpected epidemiological gains in the recent past have been creating justifiable optimism. Creating successes on the ground is the best way to gain widespread support in terms of better plans, more talent, expanded financing. Endemic countries and the talent there are an important pillar of success.

With all sincerity,

Joel Almeida

 

________________________________________________________________________________

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) What a newly diagnosed person can ask of their health professional

 

Leprosy Mailing List –  June 13,  2025

 

Ref.:  (LML) What a newly diagnosed person can ask of their health professional

From: Joel Almeida, Mumbai, India

 

 

 

Dear Pieter and colleagues,

Congrats to Linda Lehman and Pieter Schreuder for putting themselves in the shoes of a person with lived experience of HD (H. Disease). Ref.:(LML) "What determines a successful leprosy control program: preventing disability and relieving human suffering or Zero leprosy?" 30 May 2025

What would each of us ask from our health professional if we received a diagnosis of HD?

For example:

"You started me on treatment. Now it is your job to take me safely back to full health and well-being. I intend to co-operate. Please be honest with me and my family. Give us bad news and good news as needed. Help to inform them and reassure them about my treatment. I understand that for me to be safe, you must test my nerve function every 3 months for at least two years. Then you can stop nerve damage before it becomes irreversible. You must follow me for at least five years so that I can be protected. Do not give anti-microbials to my family members unless they show clear evidence of disease, and then treat them fully and safely just as you are treating me. Protect confidentiality for me."

 

Perhaps others would ask differently or for other things..

HD disproportionately affects neglected people, including some with very little schooling. So they might not know that 85% of new nerve function impairment occurs without signs of inflammation/reaction (Croft et al 2000). Or that live HD bacilli have anti-inflammatory and anti-apoptotic effects. Even health workers might not know. But they can be told. Then anyone who is newly diagnosed can be given a safer journey back to full well-being.

With all sincerity,

Joel Almeida

________________________________________________________________________________

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) What determines a successful leprosy control program: preventing disability and relieving human suffering or Zero leprosy?

 

 

Leprosy Mailing List –  June 8,  2025

 

Ref.:  (LML) What determines a successful leprosy control program: preventing disability and relieving human suffering or Zero leprosy?

From: Kerstin Beise, Gowa, Indonesia

 

 

Dear Pieter,

May I send you a response from Al Kadri, Chairman of PerMaTa Indonesia, on the email by Linda Lehman and yourself ("What determines a successful leprosy control program: preventing disability and relieving human suffering or Zero leprosy?")

Thank you!

Regards

Kerstin Beise

 

From: Al Kadri, PerMaTa Indonesia

Dear All,

On behalf of people affected by leprosy around the world, I would like to strongly emphasize and agree with what Linda Lehman and Pieter Schreuders said in their message of 30 May 2025: 'What determines a successful leprosy control programme: the prevention of disability and the alleviation of human suffering or zero leprosy?'.

Indonesia is one of the many countries where POD and rehabilitation nowadays are almost non-existent. It is only thanks to unique efforts such as those of Dr Wim Theuvenet and Dr Ton Schreuders that a few people with leprosy-related disabilities have had access to surgery, while in many other cases it was too late. We sincerely hope that at the ILC in Bali the true situation of people affected by leprosy today will be discussed honestly.

Elimination is a noble goal, but the most important thing that we can achieve together, if we have the commitment, is zero disability and freedom from recurrent reactions.  

 

With best wishes

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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