Monday, May 12, 2025

Fw: Ref.: (LML) Infolep monthly overview of new publications on leprosy. May 2025.

 

Leprosy Mailing List – May 13,  2025

 

Ref.:  (LML) Infolep monthly overview of new publications on leprosy. May 2025.

From: Lukas Maass & Roos Geutjes, Amsterdam, the Netherlands

 

 




 Dear colleagues, 

We spotlight the upcoming launch of the ILEP Ocular Leprosy Photo Database—a collaborative effort to enhance early detection and training. Your support is greatly appreciated! 

We're excited to introduce Lukas Maass, who has recently joined as Support Officer for Infolep and InfoNTD. With a background in global health and a strong interest in knowledge sharing, Lukas will support the platforms' development and user engagement.

Enjoy reading the latest publications that are listed below. Feel free to contact us to receive the full-text versions when these cannot be found on Infolep. We would also be happy to assist you with literature searches. 

Warm regards,

Lukas Maass & Roos Geutjes 

www.leprosy-information.org
info@infolep.org
 






ILEP Ocular Leprosy Database

Ocular leprosy complications can cause irreversible disability and lead to blindness. They are often unrecognized and unreported.

Significant challenges include gaps in understanding the extent of leprosy-related blindness, and lack of a global repository of ocular leprosy photographs to train frontline health workers. Both will impact timely detection and intervention, which are crucial to prevent blindness.

The ILEP ocular leprosy photo database addresses these challenges by leveraging the potential of digital technology. The database will be launched in July 2025 and hosted on Infolep. 

We are inviting ophthalmologists, field workers and all health professionals to submit ocular leprosy photographs and relevant patient metadata on an ongoing basis, to help build this vital database.

Your contributions will be instrumental to populating the database, and advancing integrated service delivery, training, research, and AI-based screening tools for ocular leprosy.

The necessary instructions are included on this guidance document. Many thanks in advance for your support!







Practical resources


Six guiding principles to support equity in global health programmes
Knowledge for Development and Diplomacy. 2025.

DHIS2-based leprosy/Hansen disease Elimination Monitoring Tool (LEMT) – Standard operating procedures
WHO Regional Office South-East Asia. 2025. 

Global Antimicrobial Resistance and Use Surveillance System (GLASS) report Antibiotic use data for 2022
World Health Organization. 2025. 







New publications


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



Acceptability and feasibility of chemoprophylaxis with single-dose rifampicin in four leprosy-endemic districts in Benin
Djossou P, Mignanwande ZFM, Anagonou SGE, et al. Public Library of Science (PLoS). PLOS Neglected Tropical Diseases. 2025; 19 (4) : e0013057. 

Global Trends in the Incidence, Prevalence and Disability-Adjusted Life Years of Leprosy from 1990 to 2019: An Age-Period-Cohort Analysis Using the Global Burden of Disease Study 2019
Ke Zhang, Wei Zhang, Hongguang Lu. Clinical, Cosmetic and Investigational Dermatology. Informa UK Limited 2025;

Global trends and burdens of neglected tropical diseases and malaria from 1990 to 2021: a systematic analysis of the Global Burden of Disease Study 2021
Chen J, Tian X, Guo D, et al. Springer Science and Business Media LLC. BMC Public Health. 2025.

Representaciones sociales de la lepra en médicos de urgencias en Cali, Colombia
Ordóñez-Hernández CA, Guzmán-Mendoza OE, Lozano G, et al. Elsevier BV. Piel. 2025.

Digital Health Tools and Their Application in Disability Support
Chavhan GH. Modern Digital Approaches to Care Technologies for Individuals With Disabilities. IGI Global. 2025.

Empowering Individuals With Disabilities: The Role of Mobile Health Apps in Enhancing Accessibility and Health Outcomes
Ingle AW, Kshirsagar KP, Gawande PG. IGI Global. Modern Digital Approaches to Care Technologies for Individuals With Disabilities. 2025.

Self-Acceptance Among Leprosy Patients: A Qualitative Exploration of Personal and Social Challenges
Rinto Baro Kaleka V, Damayanti Y, Christine Pello S. Journal of Health and Behavioral Science. 2025.  

Fisioterapia na Qualidade de Vida de Pacientes com Hanseníase
Barbosa FHS, Macêdo GS, Oliveira MRDSD. REVISTA FOCO. Brazilian Journals. 2025; 18 (5) : 1-9. 

Challenges and opportunities in the development and implementation of zero leprosy roadmaps in low-endemic settings: Experiences from Bolivia, Pakistan, and Togo
Fastenau A, Schwermann F, Mora AB, et al. Public Library of Science (PLoS). PLOS Neglected Tropical Diseases. 2025; 19 (4) : e0013009. 

Leprosy with comorbidities: A call for strengthening vigilance
Ramasamy S, Panneerselvam S, Agrawal S. Ovid Technologies (Wolters Kluwer Health). Journal of Family Medicine and Primary Care. 2025; 14 (4) : 1572-1573. 

Ensino da hanseníase nas faculdades de medicina de um estado com baixa endemicidade
Vitiritti Ferreira Zanardo B, Baruffi PP, Ens RT. Universidade Estadual do Parana - Unespar. Ensino & Pesquisa. 2025; 23 (1) : 712-723. 

A importancia da atuaçao farmaceutica na abordagem multidisciplinar de pacientes com Hanseníase 
GAMA SIQUEIRA G, SARAIVA DE ANDRADE RODRIGUES R. Guilherme Barroso L. De Freitas. Imunologia e Doenças Infecciosas e Parasitárias - Edição III. 2025.

Leprosy elimination phase in Alagoas, 2001-2022: an ecological study
Lima LVD, Pavinati G, Silva RGTD, et al. FapUNIFESP (SciELO). Epidemiologia e Serviços de Saúde. 2025.

Incidence and Clinical Patterns of Leprosy in Interior Sindh; Retrospective Study
Jaikishan , Gemnani V, Abro K, et al. Med Forum. 2025; 36 (1) : 6. 


Unprecedented in vivo activity of telacebec against Mycobacterium leprae
Chauffour A, Cambau E, Pethe K, et al. Public Library of Science (PLoS). PLOS Neglected Tropical Diseases. 2025; 19 (5) : e0013076.

The Effectiveness of Compassion-Focused Therapy on Psychological Distress Individuals with Leprosy in Tabriz
Elbeigy Zanganeh I, Kazemi AS, Rasouli N. The Effectiveness of Compassion-Focused Therapy on Psychological Distress Individuals with Leprosy in Tabriz. Int J Body Mind Cult. 12(2):74–80. 

High Serum Levels of Transforming Growth Factor β1 (TGF-β1) a Risk Factor for Neuropathic Pain in Patients with Multibacillary Leprosy
Suari, D. A. N., Widyadharma, I. P. E., Utami, D. K. I. (2025). High Serum Levels of Transforming Growth Factor β1 (TGF-β1) a Risk Factor for Neuropathic Pain in Patients with Multibacillary Leprosy. International Journal of Scientific Advances (IJSCIA), Volume 6| Issue 3: May-Jun 2025, Pages 406-411.

Data-Based Evidence on the Causality Model of Social Stigma on Medication Compliance in Leprosy Patients in Bone District, Indonesia
Haerana BT, Mariani , Sadarang RAI, et al. Window of Health : Jurnal Kesehatan. Universitas Muslim Indonesia. 2025; 8 (2) : 145-156.

What matters most in Cirebon, Indonesia: cultural nuances to health-related stigma
Sopamena Y, Sutiawan R, Visser MJ, et al. Global Public Health. Informa UK Limited. 2025.

Audiological findings in patients with leprosy
Uzut M, Erdur Uzut S, Kayhan FT, et al. Informa UK Limited. Acta Oto-Laryngologica. 2025; 145 (5) : 395-399. 

Comments on "Cranial nerve palsies in leprosy: a systematic review of published case reports and case series"
Namdar AB, Keikha M. Springer Science and Business Media LLC. Acta Neurologica Belgica. 2025.

Leprosy: health education with children and adolescents – systematic review / Hanseníase: educação em saúde com crianças e adolescentes – revisão sistemática
Francisco MM, Albuquerque MIND, Santos LMDS, et al. Universidade Federal do Estado do Rio de Janeiro UNIRIO. Revista de Pesquisa Cuidado é Fundamental Online. 2025.

Distribuição espacial e perfis epidemiológicos da hanseníase em Anápolis (GO): um estudo de 2019-2024
Castro IDOE, Castro LC, Chaul SFM, et al. Revista Eletrônica Acervo Saúde. Revista Eletronica Acervo Saude. 2025.

The successful implementation of comprehensive control paradigm for eliminating leprosy in Yunnan Province, China
Ma T, Zhen Q, Guo F, et al. Journal of Infection. Elsevier BV. 2025; 90 (6) : 1-7. 

Time Series Analysis For Leprosy in Tocantins
Ferreira KCCL, Santos AJFD, Gomes H, et al. Revista de Gestão Social e Ambiental. RGSA- Revista de Gestao Social e Ambiental. 2025; 19 (4) : 1-15. 

Penyimpanan informasi rekam medis kesehatan dalam bentuk program pencegahan dan penanganan kusta di Indonesia
Trisnanto PY, Gunawan . JURNAL TEKNOLOGI KONSEPTUAL DESAIN. 2025. 

Increased <CD8dim and Decreased CD8brigh T Cells as Immunological Signature for Multibacilary Leprosy Patients
de Castro YS, Nascimento LS, da Silva JA, et al. Wiley. Immunology. 2025. 










Case Reports


Unmasking the mimic: Leprosy neuropathy misdiagnosed as chronic inflammatory demyelinating polyneuropathy: A case report from Saudi Arabia
AlOtaibi MK, AlQahtani BG, AlQawahmed RM. Saudi Medical Journal. Neurosciences. 2025; 30 (2) : 5.
 





News & Events




Mentorship Opportunity: Empower Women in NTD Leadership
The Mwele Malecela Mentorship (MMM) Program for Women in NTDs aims to increase gender equality in representation and leadership by developing and supporting mid-career African women to become leaders and champions in NTD elimination at national and international levels. The application period closes on May 12, 2025.

WHO Director General's opening remarks at the Member State briefing on the programme budget– 22 April 2025
News item by the World Health Organization. 

African health experts commit to accelerate efforts to eliminate Neglected Tropical Diseases | InfoNTD
Lomé  – African health experts have renewed commitment to accelerate efforts to end Neglected Tropical Diseases (NTDs) that continue to affect over a billion people globally, 40% of whom live in the African region.

16th Annual NNN Conference 2025
September 30-October 2, 2025; Kampala, Uganda
The conference will see NTD practitioners, government officials, community leaders, researchers, policymakers, and other stakeholders from over 50 countries deliberating on challenges and solutions for NTD elimination. Submissions for the 2025 conference will open in April 2025.

World Health Summit 2025
October 12-14, 2025; Berlin, Germany & Online
The World Health Summit is the unique international strategic forum for global health. Held annually in Berlin, it brings together stakeholders from politics, science, the private sector, and civil society from around the world to set the agenda for a healthier future by inspiring innovative solutions for better health and well-being for all.


3rd Global Forum of People's Organizations on Hansen's Diseas
July 4-6, 2025; Bali, Indonesia
ILEP member Sasakawa Health Foundation, in consultation with persons affected by leprosy and other stakeholders, is organizing the 3rd Global Forum of People's Organizations.

22nd International Leprosy Congress 
July 5-9, 2025; Bali Nusa Dua Convention Centra (BNDCC), Bali, Indonesia 
This year the 22nd International Leprosy Congress (ILC) will be held in Bali, Indonesia! The congress uphold the theme: "Towards a World with Zero Leprosy". The theme aims to enhance the evidence into the clinical care in leprosy early diagnosis and therapeutics in the global era and prepare to face the new perspective of dermatology practice. The deadline for late registration is July the 6th.

European Congress for Tropical Medicine and International Health 2025
September 29-October 2, 2025, Hamburg
Save the Date! ECTMIH 2025 is currently still in the planning stage. All information is expected to be available from January 2025 and registration will be possible from then on.

WHA78 Side Event ​​ "Health Financing: What now? What next? Insights from malaria, dengue & Neglected Tropical Diseases
Hotel Royal, Geneva, Switzerland

Call for applications: 2025 RSTMH Early Career Grants Programme
The Royal Society of Tropical Medicine and Hygiene. The projects can be on any topic related to tropical medicine and global health, from across the research spectrum of lab, translation, implementation, and policy. Apply for an RSTMH Early Career Grant by 12:00 PM BST (midday) on Wednesday 14 May 2025.








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

HARP -  Hansen's Disease Antimicrobial Resistance Profiles




GDPR & the Infolep newsletter

 
New EU data protection regulations came into force on 25 May 2018. We have been reviewing our practices with regards to the GDPR, including our privacy statement and mailing list.

Infolep sends out monthly e-mails with an overview of recent publications on leprosy and related issues. The purpose of this activity is to keep subscribers up to date.

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.

You can update your preferences or unsubscribe from this list at any time.



________________________________________________________________________________

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

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

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


--
You received this message because you are subscribed to the Google Groups "Leprosy Mailing List" group.
To unsubscribe from this group and stop receiving emails from it, send an email to leprosymailinglist+unsubscribe@googlegroups.com.
To view this discussion visit https://groups.google.com/d/msgid/leprosymailinglist/c41fb1ca-86a0-4605-8fd2-579e4782d656n%40googlegroups.com.
Posted by at No comments:

Sunday, May 11, 2025

Fw: Ref.: (LML) Reconstructive Surgery and Physiotherapy in Leprosy Course. Sulawesi and Ambon, November 7–26, 2024

 

Leprosy Mailing List –  May 9,  2025

 

Ref.:  (LML) Reconstructive Surgery and Physiotherapy in Leprosy Course. Sulawesi and Ambon, November 7–26, 2024

 

From: Joel Almeida, Mumbai, India



Dear Pieter and colleagues,

First, congratulations to
Kerstin Beise
Pak Kadri
Ton Schreuders
Wim Theuvenet

for the fascinating report about the kindness and care to some of the least influential people in the world. ref: (LML) Reconstructive Surgery and Physiotherapy in Leprosy Course. Sulawesi and Ambon, November 7–26, 2024.

Those who benefited from the kindness of the team and of the sponsor organization might be counted in scores or hundreds. There is a wider impact. Demonstrating kindness and respect to some of the most vulnerable people is like lighting a candle in the dark. Also, collaboration between persons at the bottom of the heap and professionals with no conflicts of interest sets a good example. This is how beneficial changes are encouraged and enabled.

Why do visible deformities accumulate?

Unfortunately the previous rapid decline in incidence rate of MB (multibacillary) HD (leprosy) has stalled. This was since the shortening of MDT and then the introduction of brief chemoprophylaxis . Prior to 1998 with longer MDT, reinfection of genomically susceptible LL (lepromatous) HD patients was delayed (eg., analysis by Goncalves et al using data from Acre, Brazil; genomic susceptibility data from Sartori et al, Brazil). Consequently, the incidence rate of MB HD had declined rapidly in places such as

Weifang (China)
Karigiri/Gudiyatham Taluk (India)
Karonga (Malawi)
Pakistan
Thailand
Vietnam
Ecuador

Remarkably, this sometimes occurred despite woefully low income levels.

Once anti-microbial protection against reinfection of genomically susceptible LL HD patients started to be withdrawn prematurely, the consequences appeared from about 2005 onwards. MDT was shortened to only 12 months in 1998. LL HD patients were left unprotected against reinfection in endemic areas. The earlier rapid decline of MB HD was lost. The introduction of brief chemoprophylaxis from about 2010-2013 onwards was the final blow. Stagnation in incidence rate became firmly entrenched. This is attributable in large part to:

a) Reinfection of LL HD patients in endemic areas
b) Harmful effects of brief chemoprophylaxis (mainly, disruption of safe self-healing & boosted risk of visible deformity, together with delayed diagnosis of LL HD chemoprophylaxis recipients)

Only the physical distancing during COVID reduced transmission temporarily. Socio-economic gains too have helped.

Countries such as Kiribati that succumbed to the policy of brief chemoprophylaxis (since 2018) have experienced stagnation or even increase in the incidence rate of MB HD among children. Children in Kiribati even showed visible deformity at diagnosis, at a rate exceeding 20/million children/yr. That is somewhat higher than 1/million population/year or zero. FS Micronesia avoided brief chemoprophylaxis and in doing so protected its children from similar harm. Wherever brief chemoprophylaxis is condoned, low income people including children are put at elevated risk of visible deformity at diagnosis.

Brazil rejected brief chemoprophylaxis in 2020. Coincidentally, since about 2022 there has been a dramatic increase in the household income of the lowest income states of Brazil, such as Maranhao (near doubling of household income within 3 years). It is attributable to conditional cash transfers (payments to the lowest income families in exchange for immunization, school attendance etc). All this, together with focus on stopping transmission by competent prompt diagnosis of LL HD, is starting to yield world-leading rates of decline in HD in states such as Maranhao. 

Epidemiologically, the basic reproductive number of LL HD (R0) drives the endemic. How many secondary LL HD cases are produced by one primary LL HD case? That is the core of the epidemiology of HD. Only in the southern USA do armadillos form the main primary cases. Otherwise it is largely unprotected LL HD cases who maintain transmission. If LL HD patients before or after treatment remain unprotected, other efforts to reduce transmission are like band-aid solutions. As long as the metaphorical "wound" of unprotected LL HD patients is neglected, bacilli spread.

What is needed for rapid decline of HD everywhere?

1) Stop brief chemoprophylaxis (it is demonstrably and seriously harmful)

2)  Promptly diagnose every LL HD patient and ensure prolonged anti-microbial protection for them in endemic areas (eg., using nasal smear bacilloscopy or LAMP based on RLEP).

3) Care for persons with lived experience of HD and their family members, including by regular monitoring of nerve function and prompt anti-inflammatory treatment, alongside comprehensive psycho-socio-economic support.

4) Care for low income people in endemic areas by creating jobs, remedying under-nutrition (providing supplements such as vit D where needed), improving schooling etc. It is in the self-interest of affluent countries to develop markets for their products and create reasons for people to make a good life in their countries of origin. That is why the International Development Association replenishment was successful.

Every person who develops signs of HD should find a basic level of competent treatment, monitoring and care at their local health facility. Along with basic treatment and care for the most impactful other diseases, plus education on healthy living. HD control through wider access to improved basic health care, backed by telemedicine expertise and travelling surgeons/physiotherapists/rehab/income generation experts.

It may be temporarily profitable for some organizations and individuals to promote harmful interventions such as brief chemoprophylaxis. The growth and spread of knowledge relentlessly makes harmful interventions unprofitable. The history of HD has too often been one of harmful interventions dressed up as beneficial to the wider population. By contrast, the spread of effective and sufficiently prolonged anti-microbial treatment across endemic areas was a triumph, a bright light in the darkness. 

Organizations that demonstrate kindness and respect for human rights deserve boosted support. Leprazending is a good example. May the most vulnerable people always be enabled to walk hand in hand with kind friends in high places. Hats off to the colleagues and friends who demonstrated kindness and expertise in Sulawesi and Ambon. 

With all sincerity,

Joel Almeida

References

1.     BMC Infectious Diseases (2019) 19:460
https://doi.org/10.1186/s12879-019-4100-6

2.   Sci Rep 2020 Jan 28;10(1):1284.  doi: 10.1038/s41598-020-58079-3

3. Indian J Lepr, Visible deformity after chemoprophylaxis. forthcoming [2025]

____________________________________________________________________________

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

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

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




--
You received this message because you are subscribed to the Google Groups "Leprosy Mailing List" group.
To unsubscribe from this group and stop receiving emails from it, send an email to leprosymailinglist+unsubscribe@googlegroups.com.
To view this discussion visit https://groups.google.com/d/msgid/leprosymailinglist/db33ba83-bde2-4473-b640-0371be1f60c3n%40googlegroups.com.
Posted by at No comments:

Tuesday, May 6, 2025

Fw: Ref.: (LML) Reconstructive Surgery and Physiotherapy in Leprosy Course. Sulawesi and Ambon, November 7–26, 2024


 

Leprosy Mailing List –  May 6,  2025

 

Ref.:  (LML) Reconstructive Surgery and Physiotherapy in Leprosy Course. Sulawesi and Ambon, November 7–26, 2024

 

From: Wim Theuvenet, Apeldoorn, the Netherlands

 

 

 

Dear Pieter,

 

We are pleased to report on our visit to Sulewesi and Ambon, Indonesia, November 2024.

 

Makassar, Sulawesi - November 7, 2024

We started today by discussing patients. One of them is S—a truly remarkable individual! Due to a type 2 leprosy immune reaction that did not respond to Prednisone, he previously had extensive, deep wounds on both legs, which have thankfully healed with new medication (Apremilast). However, after a prolonged illness, his knees are now severely contracted in a fully bent position. The deformity is so severe that neither local nor Dutch medical professionals can determine a straightforward solution.


Theoretically, a surgical solution exists, but the risk of complications is high. This was extensively discussed with S. How motivated is he to undergo a potential surgery, followed by a lengthy rehabilitation of up to two years, in the hope that he can walk again? If successful, the operation would truly be a miracle!


Ton and Wim are volunteering, with LepraZending covering the course costs. But how do you organize aftercare? Could S undertake training to support himself independently after surgery? These factors are weighed carefully for every patient.


Fortunately, S is one of the most challenging cases, and other patients are easier to assist. Early tomorrow morning, we will travel with several patients to the Elim Hospital in Toraja, where additional patients will be added to the surgical list. Local surgeons there are highly motivated to collaborate and learn new techniques.


Ton Schreuders will train a large group of physiotherapists. With his extensive experience, he excels at this. From our privileged perspective, it's inspiring to face such meaningful challenges. It's amazing that so many people make this work possible in so many ways!

Toraja, Sulawesi - November 11–17

The rainy season has begun, and the rain pounds on the veranda roof.


A young boy with burn-induced contractures in his armpits, groin, and knees has withdrawn from surgery after his family expressed doubts. It's unfortunate, as his condition seemed surgically treatable with a high likelihood of enabling him to walk again.


On Sunday, we explored Toraja Utara (North Toraja). Local traditions include embalming the deceased with herbs and keeping them at home for some time before placing them in cave tombs. A figure resembling the deceased is then displayed in an open gallery. While initially striking, the sight has a warm and familiar feel.


Yesterday and today, we conducted training sessions in three parallel groups:

  • Dr. Diana Liben and Dr. Sri Wahyuni: Educated healthcare staff on leprosy diagnosis and treatment.
  • Ton Schreuders: Taught physiotherapy techniques for leprosy to about 30 paramedics.
  • Dr. Iswahyudi and Wim: Performed surgeries on hands affected by leprosy alongside Dr. Francisca.

Some patients operated on last year returned for follow-up on their other hand, reflecting their trust in the results.


During the training, I (Ton) observed the treatment of J, a boy with paralysis in his right arm, initially suspected of leprosy. Further investigation revealed it was due to a previous dengue infection that affected his brain. This emphasized the importance of careful diagnostics.


The atmosphere is excellent, and the contrasts remain striking. The large Elim Hospital, run by the Church, plays a critical role in care provision. For claw-hand correction, we used the usual plaster splint, but the hospital lacked scissors or saws to remove it later. Fortunately, a dedicated rehabilitation doctor from Makassar visits every two weeks and can probably lend scissors from the hospital in Makassar. A problem solved with goodwill!

At the end of the day, we saw a touching case of an elderly leprosy patient with an ill-fitting below-knee prosthesis. She had to wear 20 socks layered over each other to get any support, resulting in a wound on her stump on one side and a severely infected foot on the other. She lives alone in a leprosy colony, where a group of fellow residents takes care of her. Unfortunately, her insurance will not replace her prosthesis for another two years.


We also saw other patients with deformities caused by past burn injuries.


One case was A, who had developed contractures in the armpit, abdomen, groin, and knees due to an old burn. Although extensive, these deformities seemed operable to us. However, his parents ultimately decided against surgery.


Another patient suffered severe burns six years ago, primarily affecting his left elbow, wrist, and hand. This challenging case was addressed by the surgical team led by Dr. Yudi, Dr. Francisca, and myself (Wim). The operation appears to have gone well; his hand has good circulation, normal sensation, and the fingers are already moving quite well. Rehabilitation still lies ahead, but Ton has left clear instructions.


Makassar, Sulawesi - November 17

Last night, after an 11-hour bus ride from North Toraja, our team returned to Makassar. Reflecting on the experience, it was a productive time there. Teaching was a challenge because basic knowledge about leprosy has entirely disappeared over the past 30 years. If we want to eradicate the disease, this knowledge must be regained.


Dr. Diana Liben and Dr. Sri Wahyuni, each with around 50 years of experience, trained a large group of doctors from 28 rural clinics (puskesmas) over the past week. Together, they identified several new patients suspected of leprosy, fortunately, at an early stage!


Ton worked with a mixed group of physiotherapists and other interested participants, teaching them basic knowledge that was otherwise missing. He covered exercises for stiff joints, making splints, and teaching pre- and post-operative exercises. This allowed us to perform surgeries on several hands affected by leprosy. A great team effort!


We are incredibly proud of LepraZending for enabling treatments that also address non-leprosy conditions, a fantastic way to reduce stigma! A donor has been found to provide M (the patient with "20 socks") with a properly fitting new prosthesis, requiring her to travel to Makassar twice.


There is still a long road ahead! However, it is heartening that care can be provided with such comprehensive attention to every patient. Thank you, LepraZending!

Ambon - November 18–25, 2024

We (Kerstin Beise from YDTI, Ronni from PerMaTa, Ton, and I) arrived in Ambon on Monday morning, November 18, after a short night in Makassar. We were met by Pak Aïs, a retired Wasor (former leprosy supervisor). He explained that there are significant numbers of leprosy patients in the Moluccas, but stigma severely hampers early detection.


Additionally, basic knowledge of diagnosing this disease, preventing deformities, and treating complications like immune reactions causing nerve damage, is currently lacking.


On Ambon, as in Sulawesi, this situation leaves us feeling quite disheartened. Some major leprosy organizations are increasingly focusing their funding solely on "chemoprophylaxis," a strategy using brief antibiotic courses for contacts of leprosy patients to curb transmission. Meanwhile, too many leprosy patients are left unsupported in the field.


We are proud that LepraZending continues to take responsibility by emphasizing education, reducing stigma, and tackling the wide range of issues faced by current leprosy patients every day.

On Monday afternoon, we saw a large number of patients and selected them for surgery.



Dr. Ishwayudi, whom we previously trained in Makassar, Dr. Sissi from a local hospital in Ambon, and I (Wim) were thus able to operate daily.


As I write this, it is already Thursday. This morning, Dr. Ishwayudi, Ton, and I gave a joint presentation on leprosy, nerve function disorders, preventing foot injuries, and surgical possibilities for correcting functional deformities caused by leprosy. This was presented to a large group of clearly interested doctors and nurses! Afterwards, we checked several patients who had previously undergone surgery.


Yesterday, we operated on M, who has been using prednisone for some time due to severe nerve pain in his elbow and also has a "claw hand." For him, we performed tendon transfers to treat the claw hand and decompressed the painful nerve near the elbow. This morning, he expressed his joy, stating that he no longer feels nerve pain and that sensation in his pinky finger is already improving!

This afternoon, more surgeries took place.


Every time we return to the Netherlands after such a working visit, we conclude that, despite its flaws, healthcare in the Netherlands is generally well-organized. Here, the sun shines, the food in the local stalls is excellent, and the people are remarkably warm, positive, and cheerful. However, there is also considerable bureaucracy!


For example, if you want to transfer a post-operative patient from one local hospital to another for physiotherapy, it must first go through an intermediate referral from a larger regional hospital. Many doctors work in multiple hospitals, requiring everyone to be highly "flexible" as key individuals are often "on the move," leading to frequent program adjustments.


One benefit is that you quickly learn to "de-stress" here—something we could definitely benefit from in the Netherlands!


We are convinced that leprosy can indeed be eradicated globally. There are several promising developments! However, the comprehensive care provided by LepraZending will likely remain indispensable for quite some time!

CONCLUSION OF THE TRAINING IN AMBON

November 26, 2024

The entire team departed two days ago for the Netherlands, Surabaya, and Makassar. I stayed a bit longer to be available for any issues with the previously operated patients, as this type of surgery is relatively unfamiliar.

A few minor issues have been reported, such as possibly overly tight casts and some loosening stitches, including from surgeries performed at the Elim Hospital in Toraja, Sulawesi. They do not have the proper scissors to cut the casts and instead soak them off, which is not the best solution! A pair of cast scissors has been found at Medic in Apeldoorn and will be sent to them.


We look back on successful training sessions in Sulawesi and Ambon, with enthusiastic participants and patients. As previously mentioned, a significant challenge remains in finding new patients at the earliest stage of nerve damage. There is a substantial stigma and a serious lack of basic knowledge and resources. This stems from the WHO's definition post-2006, suggesting that leprosy is no longer a "public health problem."


Some "bare" numbers to outline the current situation:
WHO figures still indicate that Indonesia records 15,000–17,000 new leprosy patients per year, the third-highest number globally after India and Brazil.


Of all new patients in Indonesia, 90% have the multibacillary (MB) form, which is contagious. Of these, 8.9% are children, and approximately 30% already have some degree of nerve damage.

Across the Moluccas in 2023, 535 patients (142 of them in Ambon) underwent treatment with medication to kill the leprosy bacteria.


We can neatly summarize these numbers in Excel sheets, crafting impressive "new" strategies that, while decades old, appear innovative with a modern twist. However, what no Excel sheet can capture is the despair and exclusion many patients face after receiving their diagnosis. It requires moving "away from the desk" to listen to personal patient stories, giving the statistics the essential meaning they deserve!


That was cathartic!

After the training sessions, what remains is satisfaction.
Dr. Diane Liben (known as "the Mother of Leprosy Patients in Indonesia") and Dr. Sri Wahyuni imparted knowledge on diagnosis and treatment to a large number of rural clinic doctors. Ton Schreuders (worthy of platinum recognition for his consistent contributions) shared his expertise on nerve damage in leprosy and physiotherapy possibilities, enabling Dr. Ishwahyudi (from Makassar) and me (Wim) to perform a series of operations with improved outcomes.


There remains a feeling that we wish we could have done much, much more.


Thanks to the patients who entrusted us with their care, to Kerstin Beise (YDTI), who tirelessly prepared everything like a spider in its web, to the members of PerMaTa (young former leprosy patients) who assist in early patient detection, and to the numerous staff in all host hospitals who wanted training and offered their hospitality.


And "last but definitely not least," to LepraZending Nederland, which made all this possible.

Indeed:


"No leprosy patient should be left out in the cold!!"


Thank you!!!

 

Kerstin Beise (YDTI), Pak Kadri (PerMaTa), Ton Schreuders (Physiotherapist), Wim Theuvenet (Plastic Surgeon), LepraZending Nederland

________________________________________________________________________________

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

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

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


--
You received this message because you are subscribed to the Google Groups "Leprosy Mailing List" group.
To unsubscribe from this group and stop receiving emails from it, send an email to leprosymailinglist+unsubscribe@googlegroups.com.
To view this discussion visit https://groups.google.com/d/msgid/leprosymailinglist/5b791582-6706-4023-81a7-fcfff4a0d228n%40googlegroups.com.
Posted by at No comments:
Subscribe to: Posts (Atom)