Fw: Ref.: (LML) Detection of nerve damage in leprosy and timely treatment

Leprosy Mailing List – November 30,  2021

 

Ref.:  (LML) Detection of nerve damage in leprosy and timely treatment

 

From:  Joel Almeida, London and Mumbai

 

 

Dear Pieter & colleagues,

 

Thanks to Dr. Naafs for the important and detailed advice that can help patients to get better (not worse) once they are diagnosed. HD patients deserve respect and quality care. This includes regular nerve function monitoring as was introduced in the Brazilian national program on the initiative of Linda Lehman and associates. SORRI-BAURU is doing a great service to the world by maintaining production of these very helpful monofilaments.

 

There is no future in confining persons with HD or its sequelae to second-class care, or simply removing them from registers and forgetting about them. They are first class human beings like everyone else. Therefore, they deserve first class care. This includes at least quarterly nerve function monitoring during the first 2 years after the start of treatment, so that anti-inflammatory treatment can be started at the first sign of sensory impairment. Their nerves and limbs depend upon it.

 

Dr. Naafs and other esteemed colleagues will be able to advise on the best practical ways of testing for impaired temperature sensation in the field. Temperature is the first sensation to be impaired, and this year's Nobel Prize in Physiology or Medicine was awarded to David Julian and Ardem Patapoutian who discovered the unique molecular bases for separate receptors of temperature and touch respectively. Of course, in HD frontline workers had long recognised (from e.g., Nauru in the early 20C or perhaps even before) that temperature was the first sensation to be impaired. There are Nobel Prizes to be had for those brilliant minds who devote at least some of their time to studying HD, even if they find their greatest satisfaction from seeing patients get better.

 

Enlightened programs have taken specialist nerve function testing to the frontlines, by providing well trained specialist health workers with transport. This allows a single worker to provide competent nerve function testing services across a wide area. Even patients who cannot afford to travel can have these competent nerve function testing services provided regularly at their doorstep. This service is highly suited to NGOs, and it is attractive to the public and other donors. Those NGOs who provide this service are likely to fare better than others.

Best,

 

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) Viewing disruption as an opportunity to rebuild

 

Leprosy Mailing List – November 30,  2021

 

Ref.:  (LML) Viewing disruption as an opportunity to rebuild

 

From:  Claudio Salgado, Belém, Brazil

 

 

Note editor: this letter appeared earlier in the Leprosy Bulletin 106 (LML, November 29, 2021). With the permission of the author, we reprint this letter in LML.

 

Dear colleagues,

Between 1989 and 1998, the number of new cases per year of Hansen's disease (HD) in the world increased from 576,361 to 805,000. This increase occurred in the context of the World Health Assembly's 1991 resolution to "eliminate leprosy as a public health problem" by the year 2000 and associated efforts to train health professionals to facilitate HD diagnosis [1].

However, since the World Health Organization (WHO) declared achievement of "elimination as a public health problem," the number of new cases counted each year plummeted to 202,195 in 2019. The number of new cases detected worldwide plunged to 127,396 in 2020 during the SARS-CoV-2 pandemic [2], leading the HD community, persons affected by HD, and health care professionals to realize the worst moment of the last 20 years for HD control. Even before the pandemic, mathematical models indicated that we may now have more than 4 million people waiting to be diagnosed [3]. This huge reduction in the number of new cases in the last two decades can be ascribed to an untested declaration of HD "elimination." Misunderstood to mean "eradication," the "elimination" declaration is associated mainly with a loss of expertise about the disease, which has actually led to a different kind of elimination: the elimination of HD diagnosis.

Cases showing few symptoms remain undiagnosed for years, and so originate the new few classic cases still diagnosed. Asymptomatic cases are usually contacts of undiagnosed and untreated HD patients who are not correctly examined because of the lack of expertise and laboratory tools necessary to identify, classify, and define those who need early treatment for latent HD. Furthermore, among well-examined contacts of HD patients there are those positive for acid fast bacilli in slit skin smear, anti-PGL-I IgM serology or RLEP RT-qPCR, or those with nerve damage detected only by electroneuromyography or ultrasound [4], [5], [6]. A group of "healthy" contacts may even have two or more of these parameters altered. Despite these issues in diagnosis, WHO's present proposal is to give a single dose of rifampicin (SDR) to all of them [7], a policy that has polarized many of us in the HD clinical community [8].

The issues are not limited to problems of diagnosis. There are persons affected by HD receiving insufficient treatment (mostly borderline or lepromatous leprosy patients) who may need more than 24 months of multidrug therapy (MDT) and those with MDT failure, who need other drug regimens that are not available to them. These drug-related treatment issues, which are accepted for other diseases like tuberculosis [9], are not currently acknowledged by WHO.

Something good can come from the disruption wrought by the SARS-CoV-2 pandemic crisis if we rebuild the HD technical program based on the following pillars:

1. Implement mandatory surveillance that relies at least on clinics, serology, and molecular biology. Communities surrounding former colonies and hot spots based on data of the last 20 years should be the initial targets.
2. Make serology, RT-qPCR, electroneuromyography, and ultrasound available to patients and contacts for diagnosis and follow-up.
3. Develop and make available new treatment regimens using other antibiotics for when a patient does not respond properly, although MDT may continue to be used as the first line scheme to treat patients and when necessary use for longer periods. 
4. Make corticoids and thalidomide widely available for taking a patient out of a reaction crisis. For patients who require treatment for longer periods, whether for persistent reactions or worsening of nerve function signs/symptoms or pain, develop other drugs and new concepts.
5. Make surgery, orthotics, prostheses and other supportive equipment or human assistance available for patient follow-up when incapacity occurs. 

These topics should be among the new global HD targets for Neglected Tropical Diseases in the WHO roadmap 2021-2030. All the matters pointed out here may be discussed under the umbrella of human rights as well, including the right of a person affected by HD to know whether they have really been cured of this complex disease. 

 

Dr. Claudio Guedes Salgado

President, Brazil Hansen's Disease Society (SBH)
http://www.sbhansenologia.org.br/historia-sbh
Full Professor, Federal University of Pará, Brazil
https://www.linkedin.com/in/claudio-guedes-salgado
Director of Health Surveillance, Belém, Pará, Brazil

 

References:

1. C. G. Salgado, J. G. Barreto, M. B. da Silva, I. M. B. Goulart, J. A. Barreto, N. F. de M. Junior, J. A. Nery, M. A. C. Frade, J. S. Spencer, Are leprosy case numbers reliable? The Lancet Infectious Diseases. 18, 135–137 (2018), https://doi.org/10.1016/S1473-3099(18)30012-4.
2. World Health Organization (WHO), Global leprosy (Hansen disease) update, 2020: impact of COVID-19 on global leprosy control. Weekly epidemiological record. 96, 421–444 (2021),  https://www.who.int/publications/i/item/who-wer9636-42-444.
3. W. C. Smith, W. van Brakel, T. Gillis, P. Saunderson, J. H. Richardus, The Missing Millions: A Threat to the Elimination of Leprosy. PLoS Neglected Tropical Diseases. 9 (2015), https://doi.org/10.1371/journal.pntd.0003658.
4. J. G. Barreto, L. de S. Guimarães, M. A. C. Frade, P. S. Rosa, C. G. Salgado, High rates of undiagnosed leprosy and subclinical infection amongst school children in the Amazon Region. Memórias do Instituto Oswaldo Cruz. 107, 60–7 (2012), https://doi.org/10.1590/S0074-02762012000900011.
5. D. F. dos Santos, M. R. Mendonça, D. E. Antunes, E. F. P. Sabino, R. C. Pereira, L. R. Goulart, I. M. B. Goulart, Revisiting primary neural leprosy: Clinical, serological, molecular, and neurophysiological aspects. PLoS Neglected Tropical Diseases. 11 (2017), https://doi.org/10.1371/journal.pntd.0006086.
6. M. B. da Silva, W. Li, R. C. Bouth, A. R. Gobbo, A. C. C. Messias, T. M. P. Moraes, E. V. O. Jorge, J. G. Barreto, F. B. Filho, G. A. B. Conde, M. A. C. Frade, C. G. Salgado, J. S. Spencer, Latent leprosy infection identified by dual RLEP and anti-PGL-I positivity: Implications for new control strategies. PLOS ONE. 16, e0251631 (2021), https://doi.org/10.1371/journal.pone.0251631.
7. World Health Organization (WHO), Leprosy/Hansen disease: Contact tracing and post-exposure prophylaxis (ed. 1, 2020), https://apps.who.int/iris/handle/10665/336679.
8. D. N. J. Lockwood, P. Krishnamurthy, B. Kumar, G. Penna, Single-dose rifampicin chemoprophylaxis protects those who need it least and is not a cost-effective intervention. PLOS Neglected Tropical Diseases. 12, e0006403 (2018), https://doi.org/10.1371/journal.pntd.0006403.
9. A. M. Ginsberg, M. Spigelman, Challenges in tuberculosis drug research and development. Nature Medicine 2007 13:3. 13, 290–294 (2007), https://doi.org/10.1038/nm0307-290.

 

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) Pocket Filaments Kits – Semmes-Weinstein monofilaments

Leprosy Mailing List – November 30,  2021

 

Ref.:  (LML) Pocket Filaments Kits – Semmes-Weinstein monofilaments

 

From:  Anthony Nicoll, Bauru, Brazil

 

Dear Dr Naafs,

I very much appreciated your letter to the Leprosy Mailing list (November 29, 2021).

I'm sure you will be relieved to know that yes, we are still producing the "Pocket Filament Kits" that I developed in Brazil some 35 years ago at the request of Occupational Therapist Linda Lehman, and with the help of surgeons, doctors, nurses, physiotherapists, and others working at the Lauro de Souza Lima Institute, here in Bauru and in Bambui and Belo Horizonte, in Minas Gerais State.

They are produced in a small extension to the orthopaedic workshop at SORRI-BAURU, which continues its services to benefit people with disabilities and their families in the region.

I remember having read a couple of articles of yours which mention the pioneering work of Graham Weddell  and his colleagues who published studies involving graded nylon suture filaments to monitor sensory loss in leprosy patients.

Here we have followed the specific diameters and length of mounted nylon "612" filaments as defined by Weinstein, and as reduced by Judy Bell-Krotoski to a manageable number of six graded filaments:  that she called the "Hand and Foot Set".  (That is, the five-filament hand set plus the 10 gram-force filament which became popularised by James Birke).  We still use the same colour-code defined by Judy and Linda.

Our "Kit" was recently tested in the UK and Europe, by

-       Doreen B. Pfau, Omer Haroun, Diana N. Lockwood, Christoph Maier, Marc Schmitter, Jan Vollert, Andrew S.C. Rice, Rolf-Detlef Treede. Mechanical detection and pain thresholds: comparability of devices using stepped and ramped stimuli. Pain Reports, 2020, 5.6.

And in the US, by

-        Marco Andrey Cipriani Frade, Dario Júnior de Freitas Rosa, Fred Bernardes Filho, John Stewart Spencer1, Norma T. Foss . Semmes-Weinstein monofilament: A tool to quantify skin sensation in macular lesions for leprosy diagnosis. Indian Journal of Dermatology, Venereology and Leprology, 2021, 1-9.

Most of our distribution has been restricted to Brazil, though we will also be exporting to India early next year. 

 

Anthony R J Nicholl

SORRI-BAURU, Brazil

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. 106, November 2021

 
Leprosy Mailing List – November 29,  2021

 

Ref.:  (LML)  WHO Goodwill Ambassador's Leprosy Bulletin NO. 106, November 2021

 

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. 106 November 2021 "Building back better to realize a leprosy-free world" today. In this issue, we feature:

MESSAGE FROM THE AMBASSADOR
According to the World Health Organization's annual global leprosy update, there were 127,396 new cases detected in 2020, a 37.1% decrease in comparison to the previous year. In my view, this is not good news. Read More

VIEWPOINT - Dr. Roch Christian Johnson, President, International Leprosy Association
Essential elements of post-pandemic leprosy services
From the latest Weekly epidemiological record on leprosy (Hansen's disease) published by the World Health Organization (WHO), the impact of the COVID-19 pandemic on the fight against leprosy has been clearly highlighted.  Read more

DATA BOX 
WHO's global leprosy update (2020 data)
Every year, the World Health Organization (WHO) receives official data on leprosy from national programs in member states worldwide. For the calendar year 2020, WHO received data from 127 countries, including all 23 global priority countries. WHO released a report on this data in September 2021. Read more

VIEWPOINT - Dr. Claudio Guedes Salgado, President, Brazil Hansen's Disease Society (SBH)
Viewing disruption as an opportunity to rebuild
Between 1989 and 1998, the number of new cases per year of Hansen's disease (HD) in the world increased from 576,361 to 805,000. This increase occurred in the context of the World Health Assembly's 1991 resolution to "eliminate leprosy as a public health problem" by the year 2000... Read more

LETTER- Yohanna Abdou, Representative, IDEA Niger
Progress in Maradi and Zinder regions of Niger
Niger is a West African country with a population of approximately 22 million people located in a semi-arid region known as the Sahel. We must deal with a fragile context that includes water-related challenges such as cyclic flood, drought, and insufficient rainfall along with epidemics of diseases such as malaria, meningitis, and, recently, COVID-19.  Read more

VIEWPOINT- Bill Simmons, Chair, Global Partnership for Zero Leprosy
GPZL paves a new path towards zero leprosy
June 15, 2012, was the day I first met Yohei Sasakawa. We met in his offices in Tokyo where we shared our dream of accomplishing the goal of freeing the world from the infection and stigma of leprosy.  Read more

REPORT - Erei Bonebati Rimon, National Leprosy Elimination Program Manager, Republic of Kiribati 
Leprosy in Kiribati
Kiribati is among the three remaining countries in the Pacific region yet to achieve the World Health Organization (WHO) target of reducing the prevalence of leprosy cases to less than 1 per 10,000 population at the national level. Read more

SPOTLIGHT- Contributed by World Health Organization (WHO) India
Accredited Social Health Activist (ASHA), a driving force behind India's public health system
Under India's National Health Mission, every village in the country has a trained female community health worker who is both selected from the village and accountable to it.   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
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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) Detection of nerve damage in leprosy and timely treatment

 

Leprosy Mailing List – November 29,  2021

 

Ref.:  (LML) Detection of nerve damage in leprosy and timely treatment

 

From:  Ben Naafs, Munnekeburen, the Netherlands

 

 

Dear Pieter,

There are two things I'm concerned about and want to discuss. The gradual disappearance of the Graded Sensory Testing and the careful monitoring of the leprosy patients. The main arguments for this occurrence are the lack of time and the focus on diagnosis which is clearly also of extreme importance. However, when a patient has been diagnosed, he or she needs to get better. This was exactly the reason why I kept working in leprosy and leprosy research. At the time, in the early 1970s, there was careful monitoring of patients showing how they were deteriorating rather than improving under "care". I was shocked. And in the 80th and 90th thanks to introducing of careful monitoring of nerve damage and adequate timely action the situation improved. But the last 20 years there is a severe deterioration.

I want to reintroduce the use of monofilaments in leprosy as it was used by John Pearson in the early 1970s and later by me. The Graded Sensory Testing started out with the Von Frey's horsehair. Nowadays a nylon filament is in use called Semmes-Weinstein monofilament. But I'm pretty sure it was originally developed, in the 1950's, by one of my promoters, Oxford anatomist Prof Graham Weddell.

It's been years that I've been concerned about the way sensory testing is done today for the diagnosis of nerve damage and the follow-up of treatment. The way we introduced the monofilaments (see attached article), it was a very simple test for the nerve trunks and proved to be the most sensitive way to determine when to start an anti-reaction treatment. After all the most significant neural damage occurs in the nerve trunks. Most importantly, testing for it can be done by the doctor himself in his doctor's office.

After publication Graded Sensory Testing was soon adopted by physical therapists (Judith Bell-Krotoski, Linda Lehman) who were very interested in assessing hands and feet to prevent skin damage. This was done on quite a few testing points on the skin, and it required a lot of concentration and time from the researcher and the patient. The consequence was that it was done less and less, certainly when it disappeared from our armamentarium with the phasing out of leprosy services. It is not even produced at Sorri Brazil anymore (see how it was developed in an article by Linda Lehman, attached). Today you have to buy it from Carville USA. Elsewhere I noticed they are out of stock, and it is not known when they will be available again. The best way is to make them yourself. The use of ballpoint pen promoted by Jean Watson is more or less a desperate solution and only valuable in experienced hands, unlike the monofilaments.

The other problem I noticed is that most leprosy workers feel that it takes too much time to assess a leprosy patient, so they often leave the assessment to others or don't do the assessments at all.

How you should attend to your patients, including discovering impending nerve damage during follow-up, when you no longer have a well-trained physical therapist? The way I see it and do it.

Have the patient enter your doctor's office barefoot, bringing his/her shoes. Watch how he/she walks and check whether the shoes are appropriate. Have the patient stand in front of you and look at his/her toes, are hammertoes developing? Then have the patient sit and feel whether the soles of his/her feet are sweating and whether there are wounds. Do a simple 2-point discrimination test on forefoot and heel. This is just as sensitive as monofilaments and less time consuming. Test dorsiflexion of the feet and big toes. Then feel the nerves (lateral peroneal and posterior tibial) for enlargement, consistency, and tenderness. Then the hands : feel for sweat and test the feeling with the monofilaments, but only the thenar and hypothenar. Be careful not to test in a skin lesion. Note any increasing muscle atrophy. Do a Voluntary Muscle Test (VMT) for thumb abduction, ie movement of the thumb from the little finger upwards. For the little finger test the abductor digiti mini, then the little finger moves to the side. Feel the muscle for the contraction. Then palpate the nerves, ulnar and median. Study their face for asymmetry, do they blink and are their eyes in danger of sensory loss? Test the eye-closing force. Important is to ask them to close the eyes very lightly to see whether there is a small gap between the upper and lower eyelid because this is an early sign of loss of strength.

Record everything carefully. You can use a ready-made form or mention the deviations in your notes. All this can be done in 5-10 minutes. When he/she comes in, talk to the patient after you have prepared by reviewing your notes about the patient. Talk not only about the disease but about his or her family, work and problems too. Take personal notes. (These are private between you and the patient)

In this way, an increase in nerve damage can be detected early and the action is timely. The patient can get better instead of worse under your care, what happens too often nowadays.

Worried

Ben

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) info Hansen 2021

 

 
Leprosy Mailing List – November 25,  2021

 

Ref.:  (LML) info Hansen 2021

 

From:  Patricia Deps, Espirito Santo, Brazil

 

 

 

Dear Pieter,

I would like to introduce to you the third edition of info Hansen, which addresses challenges in Hansen's disease in Brazil.

The wide and varied content of the info Hansen website includes contributions from several countries, and up-to-date scientific writing. It provides access to chapters of the Clinical Practice in Hansen's Disease eBook, written and reviewed by experts in Hansen's disease, and the ever-expanding info Hansen Blog disseminates new, interesting and provocative scientific, social and political ideas about Hansen's disease.

Highlights of the third edition include an essay by Milton Moraes from FIOCRUZ about the NAT-HANS diagnostic test for Hansen's disease, describing the scientific partnerships which led to its production.

 

Essays from Jaison Barreto from Instituto Lauro de Souza Lima (ILSL) in Bauru (Brazil) and from Ximena Illarramendi from FIOCRUZ discuss MDT and relapses.

Claudio Tonello from ILSL explains Hansen's disease reactions in a video lecture and short article, whilst a personal perspective on this painful condition, 'A day of pain' is provided by Patricia Soares from MORHAN-Bahia (Brazil).

Preservation of memory and the right to heritage is discussed in articles by Sônia Rampim from the Brazilian Institute for National Historical and Artistic Heritage (IPHAN) and by Amanda Caporrino & Adda Alessandra Ungaretti from São Paulo.

 

Lucas Delboni, a medical student, and Patrícia Deps write about support from persons affected in Brazil for the name change from leprosy to Hansen's disease (hanseníase).

In new video uploads to the info Hansen YouTube channel, you can watch an interview with Artur Custódio, President of MORHAN, talking about the obstacles and difficulties of a life dedicated to Hansen's disease advocacy in Brazil. 

 

There is a fascinating interview with Susilene Tonelli Nardi, who talks about the centenary of the Brazilian scientific journal, Hansenologia Internationalis, and Gerson Fernandes of the Brazilian Ministry of Health discusses his work on Hansen's disease and his thoughts on the future of Hansen's disease in Brazil.

Finally, the info Hansen YouTube channel has five new clinical lectures on Hansen's disease: (in Portuguese) Susilene Nardi on prevention of disabilities and use of assistive technologies, Adriana Cardozo on ocular manifestations, Maria de Jesus Alençar on post-MDT follow-up, Ana Lucila Moreira on elec troneuromyography and ultrasonography, and (in English) Henk Eggens on capacity building.

As a digital platform, info Hansen aims to disseminate what is being done in Brazil and the world to improve the lives of persons affected by Hansen's disease, as well as new scientific findings and personal and ethical reflections. It provides a channel of communication with people from different parts of the world, and information is published whenever possible in Portuguese, Spanish, English and French.

In this spirit, we warmly invite international contributors to contribute new lectures in these and other languages.

To learn more, please visit www.infohansen.org

Sincerely,

 

Patricia D. Deps, MD, MSc, PhD
Dermatology and Hansen's disease
Full Professor. Department of Social Medicine
Postgraduation Programme of Infectious Diseases
Federal University of Espirito Santo
Vitória-ES. Brazil
Phone + 55 27 99999 6390
https://orcid.org/0000-0002-9707-1934

www.infohansen.org

 

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) Subject: Infectious Diseases Global Education Network and Leprosy Education Programme on MedShr

 
Leprosy Mailing List – November 23,  2021

 

Ref.:  (LML) Subject: Infectious Diseases Global Education Network and Leprosy Education Programme on MedShr

 

From:  Erik Post, Raglan, New Zealand

 

Dear Pieter and colleagues,

Recently I was in touch with Sugam Taneja (see email below) concerning a new learning platform that can be used for leprosy. As we all know that at the field level human capacities for leprosy are under threat. In that context, a learning platform where knowledge about leprosy cases can be shared and where a variety of health providers can learn more about leprosy might be helpful. Of course this heavily depends on active participation in bringing cases to the platform, commenting on cases presented by other platform users, and by spreading the message that all of this is easily accessible on computer and smartphones.

Against this background, I would like to invite you to join Infectious Diseases Global Education Network on MedShr: https://en.medshr.net/groups/398818. This group is for Infectious Diseases Specialists, Primary Care Physicians and other HCPs to connect and discuss Infectious Diseases cases together. The group allows you to share and discuss your experiences and challenges around the care of patients with Leprosy, from making an early diagnosis of leprosy to managing patients with complex presentations and disabilities.

MedShr is a secure and compliant discussion platform enabling doctors to share and discuss cases in a private professional network. Now with over 1.5 million members using MedShr, it's the world's leading case discussion platform. This initiative is supported by Novartis, however Novartis employees do not have access to the MedShr platform or clinical cases.

MedShr have now launched the first case on leprosy in the series and would love to get your thoughts on it: What is the most likely subtype of leprosy affecting this 40-year-old gentleman?

From there, please do share some of your own cases around Leprosy with the group. The MedShr app makes it easy to capture images, obtain patient consent (if required) and discuss cases with peers and colleagues. There are monthly case competitions on MedShr and you can also earn CPD credits from MedShr for the case discussions that you have.

MedShr is free to use and available from

• the App Store: ‎MedShr: The App for Doctors on the App Store (apple.com)
• Google Play: https://play.google.com/store/apps/details?id=net.medshr.android&_branch_match_id=991217798110987869&_branch_referrer=H4sIAAAAAAAAA8soKSkottLXz01NKc4o0sss0S%2FISawEAOZA8dsWAAAA
• Alternativey, you can register on the MedShr website https://en.medshr.net/groups/398818?id=398818.

For help getting started, please contact Dr Sugam Taneja (sugam.taneja@medshr.net) from the MedShr team.

 

Kind regards,

 

Erik Post

 

Erik Post, MD, MSc Health Policy, Planning and Financing

773 Te Mata Road, Raglan 3296, New Zealand

erikbaspost@gmail.com

Skype: erikbasje

Mobile +64 2040271819; Landline +64 78250148

LinkedIn: linkedin.com/in/erik-post-888169b

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) Consultation from the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members

 
Leprosy Mailing List – November 14,  2021

 

Ref.:  (LML) Consultation from the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members

From: Maria Teresa Neto, Geneva, Switzerland

 

Dear Sir/Madam,

 

The Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Alice Cruz, is preparing a thematic report on the right to the highest attainable standard of physical and mental health for persons affected by leprosy / Hansen's disease and their family members, to be presented at the 50th session of the Human Rights Council in June 2022.

 

The Special Rapporteur kindly requests your collaboration with updated information on this issue. Kindly find attached some guiding questions.

 

Importantly: when sharing your inputs, please state clearly if you give consent to the Special Rapporteur to acknowledge your organization's contribution in her report or if you prefer to keep your organization's name confidential.

 

Since the Special Rapporteur finishes her report on March 2021, she kindly asks you to send your inputs no later than 31 December, 2021, to the email: ohchr-srleprosy@un.org

 

The Special Rapporteur has also prepared an online questionnaire for individuals to share their experience, which will be distributed soon.

 

As always, your inputs are crucial to the work of the Special Rapporteur and are deeply appreciated.

 

Thank you

Best regards

 

  ohchr-srleprosy@un.org

___________________________________________________

 

Chère Madame, cher Monsieur,

 

La Rapporteuse Spéciale pour l'élimination de la discrimination contre les personnes touchées par la lèpre et les membres de leur famille, Alice Cruz, prépare un rapport thématique sur le droit au meilleur état de santé physique et mentale possible pour les personnes touchées par la lèpre/maladie de Hansen et les membres de leur famille, qui sera présenté à la 50e session du Conseil des droits de l'homme en juin 2022.

 

La Rapporteuse Spécial vous prie de bien vouloir collaborer avec des informations actualisées sur cette question. Veuillez trouver ci-joint quelques questions d'orientation.

 

Important : lorsque vous partagez vos contributions, veuillez indiquer clairement si vous autorisez la Rapporteuse Spéciale à reconnaître la contribution de votre organisation dans son rapport ou si vous préférez garder le nom de votre organisation confidentiel.

 

Étant donné que la Rapporteuse Spéciale termine son rapport en mars 2021, elle vous demande de bien vouloir envoyer vos contributions au plus tard le 31 décembre 2021, à l'adresse e-mail: ohchr-srleprosy@un.org

 

La Rapporteuse Spécial a également préparé un questionnaire en ligne pour que les individus partagent leur expérience, qui sera bientôt partagé.

 

Comme toujours, vos contributions sont cruciales pour le travail de la Rapporteuse Spécial et sont profondément appréciées.

 

Merci beaucoup

Bien cordialement,

 

ohchr-srleprosy@un.org

­­­­­­­­­­­­­­­­­­______________________________________________

 

Estimado/a Señor/Señora,

 

La Relatora Especial para la eliminación de la discriminación en contra de las personas afectadas por la lepra y sus familiares, Alice Cruz, está preparando un informe temático para ser presentado al Consejo de Derechos Humanos en su 50 ° período de sesiones en junio de 2022. Este informe abordará el derecho al más alto nivel posible de salud física y mental de las personas afectadas por la lepra / enfermedad de Hansen

 

La Relatora Especial solicita su colaboración con información actualizada sobre este tema.

 

Sírvase encontrar adjunto algunas preguntas orientadoras.

 

Una nota importante: cuando comparta sus contribuciones, indique claramente si autoriza a la Relatora Especial a reconocer las contribuciones de su organización en su informe o si prefiere que el nombre de su organización se mantenga confidencial.

 

Dado que la Relatora Especial finaliza el informe en marzo de 2021, solicita amablemente que envíen sus contribuciones antes del 31 de diciembre de 2021 al correo: ohchr-srleprosy@un.org

 

La Relatora Especial también elaboró una encuesta virtual para que los individuos puedan compartir su experiencia y que será compartida muy pronto.

 

Como siempre, sus contribuciones son fundamentales para la labor de la Relatora Especial y son muy valoradas y apreciadas.

 

Muchas gracias

Cordialmente,

ohchr-srleprosy@un.org

 

______________________________________________

 

A Relatora Especial para a eliminação da discriminação contra as pessoas afectadas pela hanseníase e membros das suas famílias, Alice Cruz, está a preparar um relatório para ser apresentado ao Conselho de Direitos Humanos na sua 50ª sessão em Junho de 2022. Este relatório abordará o direito ao mais alto patamar de saúde física e mental para as pessoas afectadas pela hanseníase e seus familiares. 

 

A Relatora Especial solicita gentilmente a vossa colaboração com informação actualizada este tema. Por favor, encontre em anexo algumas perguntas orientadoras.

 

Uma nota importante: quando partilharem as vossas contribuições, por favor digam claramente se dão autorização à Relatora Especial para reconhecer as contribuições da vossa organização no seu relatório ou se preferem que o nome da vossa organização seja mantido confidencial. Uma vez que a Relatora Especial termina o relatório em Março de 2021, ela solicita gentilmente que enviem suas contribuições até 31 de Dezembro de 2021 ao email: ohchr-srleprosy@un.org

A Relatora Especial também elaborou um questionário online para que os indivíduos possam partilhar as suas experiências com a hanseníase e que será partilhado em breve.

 

Como sempre, as vossas contribuições são cruciais para o trabalho da Relatora Especial e são altamente valorizadas e apreciadas.

 

Muito obrigada

 

ohchr-srleprosy@un.org

 

 

Maria Teresa Nieto
Programme Assistant
Justice Protection and Social Rights Unit

Special Procedures Branch

Thematic Engagement, Special Procedures and Right to Development Division
Office of the United Nations High Commissioner for Human Rights
E-mail: maria.nietocastaneda@un.org
Tel: +41.22.928.92.19
Fax: +41.22.917.90.08
Web: www.ohchr.org

 

 

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 - Nov '21

 

Leprosy Mailing List – November 3,  2021

 

Ref.:  (LML) Infolep monthly overview of new publications on leprosy - Nov '21

 

From:  Aniek Akerboom, Amsterdam, the Netherlands

 

 

Dear colleagues, 

Infolep is keen to receive your feedback on how can we best meet your information needs. Your input is essential for us to be of excellent service to you, so please click on the button below to take part. Many thanks!

Below you will find the list of new publications on leprosy and interesting events. Feel free to contact me to receive full-text versions if these cannot be found through the Infolep portal. Also, I would be happy to assist you with literature searches on Infolep.

Warm regards,

Anniek Akerboom

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

 

 

Highlighted

 

Fact sheet: An unfinished business: discrimination in law against persons affected by leprosy and their family members
Cruz A. 2021.
 

ILEP commentary: An unfinished business: discrimination in law against persons affected by leprosy and their family members
ILEP. 2021.
 

Fact sheet: Progress toward zero leprosy
Global Partnership for Zero Leprosy. 2021.
 

 

 

 

New publications

 

The trajectory of illness and the pattern of care seeking by leprosy patients in a leprosy endemic district of Bangladesh
Monjurul Karim M, Probandari A, Alamgir H, et al. Leprosy Review. Lepra. 2021; 92 (3) : 287-297.
 

Knowledge, attitudes and practices of health professionals towards people living with lymphoedema caused by lymphatic filariasis, podoconiosis and leprosy in northern Ethiopia.
Dellar R, Ali O, Kinfe M, et al. International health. 2021.
 

A qualitative study on the implementation of a holistic care package for control and management of lymphoedema: experience from a pilot intervention in northern Ethiopia.
Ali O, Kinfe M, Semrau M, et al. BMC health services research. 2021; 21 (1) : 1065.
 

A new paradigm for leprosy diagnosis based on host gene expression.
Leal-Calvo T, Avanzi C, Mendes M, et al. PLoS pathogens. 2021; 17 (10) : e1009972.
 

Factors associated with treatment defaulting among adult leprosy patients in Sri Lanka: a case-control study
Liyanage NR, Arnold M, Wijesinghe MSD. Leprosy Review. Lepra. 2021; 92 (3) : 247-259. 
 

Hanseníase: crenças e tabus de agentes comunitários de saúde
Alencar OMD, Pereira TM, Heukelbach J, et al. Revista Bioética. FapUNIFESP (SciELO). 2021; 29 (3) : 606-614.
 

Conhecimento dos profissionais da saúde sobre o autocuidado em hanseníase
Angelim DF, Duarte RB, Tavares MRDS, et al. Research, Society and Development. Research, Society and Development. 2021; 10 (13) : e556101321427. 
 

Repurposing Drugs to Combat Drug Resistance in Leprosy: A Review of Opportunities.
Sharma M, Singh P. Combinatorial chemistry & high throughput screening. 2021.
 

Leprosy case series in the emergency room: A warning sign for a challenging diagnosis.
Filho F, Lima F, Voltan G, et al. The Brazilian journal of infectious diseases : an official publication of the Brazilian Society of Infectious Diseases. 2021.
 

Delay in diagnosis as a prognostic factor for disability in patients with leprosy in Paraguay. Case and control study.
Aguilera M, Samaniego L, Samudio M. Revista chilena de infectologia : organo oficial de la Sociedad Chilena de Infectologia. 2021; 38 (4) : 532-539.
 

 

Leprosy in wild chimpanzees.
Hockings K, Mubemba B, Avanzi C, et al. Nature. 2021.
 

The state of the leprosy epidemic in Yunnan, China 2011-2020: A spatial and spatiotemporal analysis, highlighting areas for intervention.
Chen X, Shui T. PLoS neglected tropical diseases. 2021; 15 (10) : e0009783.
 

Renaissance of Hansen's Disease in Post-Elimination Era in North India: A Retrospective Clinico-Bacteriological Study.
Hazarika N, Gupta P, Dhanta A, et al. Cureus. 2021; 13 (8) : e17514.
 

Leprosy in children in Cuba: Epidemiological and clinical description of 50 cases from 2012-2019.
Castillo R, Gascón L, Ruiz-Fuentes J, et al. PLoS neglected tropical diseases. 2021; 15 (10) : e0009910. 
 

Epidemiological review of leprosy in WHO's Western Pacific Region: 1991-2019.
Rahevar K, Morishita F, Oh K, et al. Western Pacific surveillance and response journal : WPSAR. 2021; 12 (3) : 34-46.
 

Autochthonous North American Leprosy: A Second Case in Canada.
Naidu P, Sharma R, Kanji J, et al. Infectious disease reports. 2021; 13 (4) : 917-923. 
 

Mycobacterium leprae diversity and population dynamics in medieval Europe from novel ancient genomes.
Pfrengle S, Neukamm J, Guellil M, et al. BMC biology. 2021; 19 (1) : 220.
 

BCG-induced immunity profiles in household contacts of leprosy patients differentiate between protection and disease.
van Hooij A, van den Eeden S, Khatun M, et al. Vaccine. 2021.
 

Analysis of the myeloid-derived suppressor cells and annexin A1 in multibacillary leprosy and reactional episodes.
da Silva S, Cavalcante L, Junior E, et al. BMC infectious diseases. 2021; 21 (1) : 1050.
 

Mycobacterium leprae Induces Neutrophilic Degranulation and Low-Density Neutrophil Generation During Erythema Nodosum Leprosum.
Tavares I, Santos J, Pacheco F, et al. Frontiers in medicine. 2021.
 

Host Immune-Metabolic Adaptations Upon Mycobacterial Infections and Associated Co-Morbidities.
Llibre A, Dedicoat M, Burel J, et al. Frontiers in immunology. 2021.
 

Changes in B Cell Pool of Patients With Multibacillary Leprosy: Diminished Memory B Cell and Enhanced Mature B in Peripheral Blood.
Nogueira O, Gandini M, Cabral N, et al. Frontiers in immunology. 2021.
 

 

 

 

Events

 

USAID & NNN Fresh Takes: A conversation with stakeholders about doing business differently to secure sustainable NTD programs
6 Oct 2021
Recording in English
Recording in French
 

ISNTD Webinar: Accelerating development of diagnostics for NTDs: a virtual biobank to alleviate a critical bottleneck in test development and stimulate collaboration
7 Oct 2021 | Recording
 

COR-NTD 2021 Annual Meeting 'Spread truth, not disease'
8-10 Nov 2021 | Virtual
 

Women Leaders in Global Health Conference 2021
15-16 Nov 2021 | Virtual
 

 

ASTMH Annual Meeting
17-21 Nov 2021 | Virtual
 

Sasakawa Webinar Series 'Don't forget leprosy':

#1 Recording: Introducing the "Don't Forget Leprosy" Campaign

#2 Recording: Leprosy as a Human Rights Issue

#3 Eliminating leprosy in the world
2 Dec 2021 | Virtual
 

World Leprosy Day
30 Jan 2022
 

World Neglected Tropical Diseases Day
30 Jan 2022
 

 

 

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 archive

WHO Goodwill Ambassador's Leprosy Bulletin

Leprosy Review

Leprosy Review Repository (1928-2001)

Fontilles Revista de Leprología

Indian Journal of Leprosy

Hansenologia Internationalis

 

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.

 

Send us an email

 

Visit our website

 

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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) Common mental disorders: what really works

 
Leprosy Mailing List – November 1,  2021

 

Ref.:  (LML) Common mental disorders: what really works

 

 

From:  Joel Almeida, London and Mumbai

 

Dear Pieter and colleagues,

 

There is wide acceptance of the fact that common mental disorders (e.g. anxiety, depression) can be brought on or aggravated by social exclusion, job loss, disfigurement, repeated painful episodes, reinfection, amputation, disruption of relationships, eviction, homelessness, destitution and the many other disadvantages that too often accompany a diagnosis of "leprosy". 

 

Those keen on quality care for persons with HD or its sequelae might find this document interesting.

 What science has shown can help young people with anxiety and depression  

 

It is likely to be relevant to all age groups. Increasing competence tends to be reflected in better outcomes for those being served.

 

Best,

 

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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