Saturday, December 10, 2016

(LML) Competent leprosy services

Leprosy Mailing List – December 10,  2016

Ref.:   (LML)   Competent leprosy services

From:  Joel Almeida, Mumbay and London


 

 

Dear Pieter,

 

 

Mr. X was a person disfigured by leprosy. I knew him well for many years. He shared personal stories about how his life was turned upside down by the disfigurements of leprosy. His family had all emigrated from India to various affluent countries. But he remained in India, living among others disfigured by leprosy and serving them.

 

One thing he said will stay with me till the end of my life:

 

"Even the whores won't take my money."

 

That brought home to me, more powerfully than anything else, how deep were the emotional wounds accompanying the disfigurements of leprosy, and how thorough was the exclusion and isolation.

 

I had the good fortune also to enjoy the personal friendship of Drs. Paul and Margaret Brand. When Dr. Paul Brand first went to India, he was told by other doctors that if leprosy patients were allowed into a hospital, all the other patients would run out. This only boosted his determination to find solutions. Both of the good doctors faithfully kept finding solutions for these people who were shunned and neglected by most others.

 

But for the compassion and dedication of such giants, including Mahatma Gandhi, Baba Amte and many others, people affected by leprosy would have continued to be shunned and neglected for much longer. This compassion formed the slender thread by which hung services for people affected by leprosy.

 

Our scientific understanding of leprosy, particularly in microbiology, pathology, epidemiology and public health, has since advanced. We know that inexpert services for leprosy are near-useless. Because then people with lepromatous leprosy, through no fault of theirs, go undetected for years. And people with silent neuritis, through no fault of theirs, suffer avoidable permanent nerve damage and disfigurement. 

 

What is our response to inadequate and inexpert leprosy services? 

 

One proposal is to dilute the expertise even further, by diverting already inadequate resources from leprosy to other problems. We would abandon competent leprosy services so that we could join others who are working on other problems. In effect, we would condemn people affected by leprosy to avoidable disfigurement, since leprosy expertise is scarce and irreplaceable.

 

Drs. Paul and Margaret Brand, along with Mahatma Gandhi, Baba Amte, would probably cringe at these proposals. People who understand the microbiology, pathology, epidemiology, clinical and public health aspects of leprosy, would laugh, or weep.

 

Fortunately governments such as those of India, and organizations such as The Leprosy Mission International, remain committed to boosting the expertise in leprosy services. Without that expertise, we might as well shut down leprosy services and join the many who shun people affected by leprosy.

 

People disfigured by leprosy have been speaking out, especially in the past decade. They petitioned the Indian parliament to examine their inhumane living conditions. As a result, parliament ordered a sample survey of leprosy in India. The sample survey revealed that the incidence rate of leprosy in India was being under-reported by a factor of up to five. That is, India actually had not 125,000 new cases per year but nearer 600,000 new cases per year during 2008-10.

 

Meanwhile, a fictitious victory was being proclaimed. This was a triumph for M. leprae and a disaster for leprosy patients. The premature declaration of victory drove talent and resources away from leprosy. Some people, in the face of contrary evidence from the field, still continue to predict an imminent victory. This is damaging to leprosy services. 

 

The incidence rate of newly detected cases with visible deformity at diagnosis has doubled in India, since 2005. This despite spectacular increases in per capita income. The sooner we prepare for a long war, the better.

 

Concerned citizens took the Indian government to court petitioning for better staffing of leprosy services. They have put leprosy back on the agenda, and the Indian government is steadily ramping up its efforts. More finances are still required, to ensure fully competent services. We need to make a list of the activities and finances required reliably to protect people against the disfigurements of leprosy. Then the scale of the financing gap will become evident, and we can beat the drum loudly on behalf of the population at risk. That's how to raise hundreds of millions instead of tens of millions in financing.

 

Ordinary people at risk of leprosy have fought a brave battle and gained ground. Let's not be content to gather funds or accolades in the name of leprosy services, while abandoning the people at risk of disfigurement. If they are good enough for our publicity materials then they are good enough for expert services. Let's use our influence and gifts to stand shoulder to shoulder with them, and amplify their voices.

 

If we waver, let's remember Mr. X being turned away and shunned. Our scientific knowledge and compassion are slender threads. From these threads hang the hopes of people at risk of leprosy and its disfigurements. Let’s not abandon people to the disfigurements of leprosy, through carelessness, ignorance or expediency. We will do better in this long war by holding on to science, field research and compassion.

 

 

Regards,

 

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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Friday, December 9, 2016

(LML) I was dreaming

 

Leprosy Mailing List – December 9,  2016

Ref.: (LML) I was dreaming  

From:  Pranab K Das, Birmingham, UK


 

 

Dear Pieter,

 

Reading the letter by Arry Pongtiku of December 9, 2016, I must admit that I have always been fascinated by the leprologists' capacities of imagination beyond the invisible horizon of untouchable reality, as reflected by "I was dreaming" by great Ben Naafs. Probably that is one of the many reasons, why Leprosy attracts me (a part time researcher).


Kind regards,


Pranab K das


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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(LML) I was dreaming

 

Leprosy Mailing List – December 8,  2016

Ref.: (LML) I was dreaming  

From: Jim Wilton, Portland, USA


 

Dear Pieter,

 

In response to the last reference on the leprosy mailing list about nerve inflammation and compression with type 1 and type 2 reactions (LML, December 8, 2016), we have seen excellent response to nerve decompression in both groups. The decision for surgical decompression is solely determined by the clinical examination of the patient and failure to steroid therapy. Unfortunately we have not been able to categorize consistency in response with the other group in response two pharmacologic treatment.

 

Dr. Jim Wilton


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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Thursday, December 8, 2016

(LML) I was dreaming

 

Leprosy Mailing List – December 8,  2016

Ref.: (LML) I was dreaming  

From:  Arry Pongtiky, Irian Jaya, Indonesia


 

Dear Pieter,

 

May I refer to: “I was dreaming” by  Ben Naafs (LML, November 18 , 2016)  about Nerve damage. May be this dream can be translated into pictures and also linked to the issue  of Nerve Decompression (LML, November 26 and 28, 2016)

 

My impression is that this topic  is difficult to digest especially for field workers. I would like to share with the readers as I understood it!

 

Reaction type 1 causes inflammation; it will be easy to get nerve compression because of swelling. Prednisolone functions as anti-inflammation (anti-swelling and avoiding highly cellular response). Existence of mycobacterium leprae in nerves and skin as foreign bodies must be eliminated by immune system/cellular response, it is like a plane attacks and fires the targets.  Reaction type 1 will be easier to have disability. Nerve compression can be overcome with steroid and surgery?

 

Reaction type 2: If too many bacilli (mycobacterium leprae) or after few months treatment, the bacilli in the form of  fragmented or decay bacilli come into blood circulation, go far away cause inflammation, because immune system detects as foreign bodies. Antigen and antibody response happened. It will cause inflammation in vascular (vasculitis/pain and red nodules), eyes (iridocyclitis), arthritis (joint), lymphadenitis (lymph vessel), orchitis (testis). The reaction impacts more severe /ill for patient because of systemic response. Steroid and lamprene  as well as talidomide , physiotherapy may help/work well  for this type. Maybe less impact for surgery. If I did not know about triggers. My experience giving extra  antibiotic  (amoxicylin for 5 days) may help together with steroid. Looking for trigger factors is a must. Many chronic cases usually are feeling down must be addressed.

 

Note: giving steroid must be started high dose and do tapering off

 

Lucio Phenomenon....This   was a rare case, severe reaction suspect of Lucio phenomenon. According to Ben Naafs, the Lucio phenomenon is just a blocking of the venules in the skin due to number of bacilli which leads to infarction.  I did not have much experience about Lucio phenomenon, as I understood more reported in South America. Our case survived by giving MDT, good nutrition and counseling. At the time we avoided to use steroid because patient was too ill, we were worried about super infection/ sepsis. The trigger factor was pregnancy and the baby was died after delivery.

 

 

Thank you very much,

 

Arry Pongtiku

Papua,Indonesia


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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Wednesday, December 7, 2016

(LML) INFOLEP new publications on leprosy, December 2016

Leprosy Mailing List – December 7,  2016

Ref.:    (LML) INFOLEP new publications on leprosy, December 2016

From:  Jiske Erlings, Amsterdam, the Netherlands


Dear Pieter,

 

Greetings from Infolep!

Below you will find a selection of recent publications on leprosy and related issues. Feel free to contact me (infolep@leprastichting.nl) with any questions or to receive the full text version if a link to the full text is not included.


Also let me know if you have publications (articles, manuals, theses...) on leprosy to include in the portal
www.leprosy-information.org & this monthly update.

With best wishes,
 
Jiske Erlings
INFOLEP Information specialist
 

 

 

Highlighted publications

 

 

WHO Global Leprosy Strategy 2016-2020.
EnglishFrançais - Español - Portugués 

WHO Global leprosy strategy 2016-2020 - Operational Manual. 
English - Français

International textbook of leprosy.
Scollard DM, Gillis TP.
American Leprosy Missions. 2016.

Now online - with new chapters!

 

 

New publications

 

 

Infection: Red squirrels get leprosy.
Nature. 2016 Nov 16;539(7629):333.
Download PDF


Evaluation of Fluorescent Staining for Diagnosis of Leprosy and its Impact on Grading of the Disease: Comparison with Conventional Staining.
Adiga DS, Hippargi SB, Rao G, et al. J Clin Diagn Res. 2016 Oct;10(10):EC23-EC26.
Download PDF 


Platelet Rich Plasma: Efficacy in Treating Trophic Ulcers in Leprosy.
Anandan V, Jameela WA, Saraswathy P, et al. J Clin Diagn Res. 2016 Oct;10(10):WC06-WC09.
Download PDF


Significance of color doppler imaging in leprosy.
Aswani Y. Indian J Radiol Imaging. 
2016 Jul-Sep;26(3):418-419.
Download PDF


Red squirrels in the British Isles are infected with leprosy bacilli.
Avanzi C, Del-Pozo J, Benjak A, et al. Science. 2016 Nov 11;354(6313):744-747.
Read abstract 


qPCR detection of Mycobacterium leprae in biopsies and slit skin smear of different leprosy clinical forms.
Azevedo MC, Ramuno NM, Fachin LR, et al.Braz J Infect Dis. 2016 Nov 23.
Download PDF


Exploring the Complexities of Leprosy-related Stigma and the Potential of a Socio-economic Intervention in a Public Health Context in Indonesia.
Dadun D, Peters R, Lusli M, et al. Disability, CBR & Inclusive Development.
2016, 27 (3): p. 5-23.
Download PDF


Genomic diversity in Mycobacterium leprae isolates from leprosy cases in South India.
Das M, Chaitanya VS, Kanmani K, et al. Infect Genet Evol. 2016 Sep 15;45:285-289.
Read abstract


Leg ulcer in lepromatous leprosy - Case report.
Fernandes TR, Santos TS, Lopes RR.
An Bras Dermatol. 2016 Sep-Oct;91(5):673-675.
Download PDF


Multiple nerve abscesses: An unusual manifestation of lepra reaction in a patient with borderline leprosy.
Garg RK, Malhotra HS, Kumar V, et al. Neurol India. 2016 Nov-Dec;64(6):1326-1328.
Download PDF


Evaluation of oral and periodontal status of leprosy patients in Dindigul district.
Jacob Raja SA, Raja JJ, Vijayashree R, et al. J Pharm Bioallied Sci. 2016 Oct;8(Suppl 1):S119-S121.
Download PDF


Capillaroscopy in leprosy.
Lima AS, Pizzol VI, Fritsch S, et al.
An Bras Dermatol. 2016 Sep-Oct;91(5):686-687.
Download PDF


Ultrasonography of Leprosy Neuropathy: A Longitudinal Prospective Study.
Lugão HB, Frade MA, Marques-Jr W, et al. PLoS Negl Trop Dis. 2016 Nov 16;10(11):e0005111.
Download PDF


A Negative Feedback Loop Between Autophagy and Immune Responses in Mycobacterium leprae Infection.
Ma Y, Zhang L, Lu J, et al. DNA Cell Biol. 2016 Nov 17.
Read abstract


Anatopic response: Double sparing phenomenon in a patient with dapsone hypersensitivity syndrome.
Maddala RR, Ghorpade A, Adulkar S, et al. Indian J Dermatol Venereol Leprol. 2016 Nov 11.
Download PDF


Dentists' knowledge and experience regarding leprosy in an endemic area in Brazil. 
Martins RJ, Carloni ME, Moimaz SA, et al. Rev Inst Med Trop
Sao Paulo.
2016 Nov 3;58:76.
Download PDF


Leprosy Reactions in Post-elimination stage: the Bangladesh experience.
Mowla MR, Ara S, Rahman AM, et al. J Eur Acad Dermatol Venereol. 2016 Nov 15.
Read abstract


The influence of assistive technology on occupational performance and satisfaction of leprosy patients with grade 2 disabilities.
Muniz LD, Amaral IG, Dias TD, et al. Rev Soc Bras Med Trop. 2016 Sep-Oct;49(5):644-647.
Download PDF


Leprosy trends at a tertiary care hospital in Mumbai, India, from 2008 to 2015.
Muthuvel T, Isaakidis P, Shewade HD, et al. Glob Health Action.
2016 Nov 23;9:32962. 
Download PDF 


The involvement of endothelial mediators in leprosy.
Nogueira MR, Latini AC, Nogueira ME.
Mem Inst Oswaldo Cruz. 2016 Oct;111(10):635-641.
Download PDF


Demographic and Psychosocial Life of Leprosy Affected People in Bangladesh.
Hossain QZ, Al Hadi MA, Boiragee J, et al. International Journal of Perceptions in Public Health, 2016; 1(1), 39-53.
Download PDF


Generalized granulomatous dermatitis following Mycobacterium w (Mw) immunotherapy in lepromatous leprosy.
Khullar G, Narang T, Nahar Saikia U, et al. Dermatol Ther. 2016 Nov 28.
Read abstract


Excavating the surface-associated and secretory proteome of  Mycobacterium leprae for identifying vaccines and diagnostic markers relevant immunodominant epitopes.
Rana A, Thakur S, Bhardwaj N, et al. Pathog Dis. 2016 Nov 16.
Read abstract


Perineural and intraneural cutaneous granulomas in granulomatous mycosis fungoides mimicking tuberculoid leprosy. Rodríguez G, Téllez A. Int J Dermatol. 2016 Dec;55(12):1336-1340.
Read abstract


A unique case of concomitant intra and extracranial Hansen's disease.
Sharma D, Gupta A, Chhabra SS, et al. Acta Neurochir (Wien).
2016 Nov 10.
Read Abstract


Descrição dos registros repetidos no Sistema de Informação de Agravos de Notificação, Brasil, 2008-2009.
Silva SH Júnior, Mota JC, Silva RS, et al. Epidemiol Serv Saude. 2016 Jul-Sep;25(3):487-498.
Download PDF


Leprosy in red squirrels.
Stinear TP, Brosch R. Science.
2016 Nov 11;354(6313):702-703.
Read abstract


Clofazimine Enteropathy: A Rare and Underrecognized Complication of Mycobacterial Therapy.
Szeto W, Garcia-Buitrago MT, Abbo L, et al. Open Forum Infect Dis. 2016 Sep 2;3(3):ofw004.
Download PDF


The role of etanercept in refractory erythema nodosum leprosum.
Thangaraju P, Durai V, Showkath Ali MK. Int J Mycobacteriol.
2016 Sep;5(3):368-369.
Download PDF


Minocycline successfully treats exaggerated granulomatous hypersensitivity reaction to Mw immunotherapy.
Vinay K, Narang T, Saikia UN, et al. Dermatol Ther. 2016 Nov 28.
Read abstract


Common variants in the PARL and PINK1 genes increase the risk to leprosy in Han Chinese from South China.
Wang D, Zhang DF, Feng JQ, et al. Sci Rep. 2016 Nov 23;6:37086. 
Download PDF


LRRK2 enhances Nod1/2-mediated inflammatory cytokine production by promoting Rip2 phosphorylation.
Yan R, Liu Z. Protein Cell. 2016 Nov 9.
Download PDF


The Functions of Disabled People’s Organisations (DPOs) in Low and Middle-income Countries: A Literature Review.
Young R, Reeve M, Grills N. Disability, CBR & Inclusive Development, 2016, 27 (3) p. 45-71.
Download PDF


Leprosy: disease, isolation, and segregation in colonial
Mozambique.

Zamparoni V. Hist Cienc Saude Manguinhos. 2016 Nov 16:0. English.
Download PDF


Lepra: doença, isolamento e segregação no contexto colonial em Moçambique.
Zamparoni V. Hist Cienc Saude Manguinhos. 2016 Nov 16:0. Portuguese.
Download PDF

 

 

Journals & Newsletters

 

 

Community Eye Health Journal: http://www.cehjournal.org/

Disability, CBR & Inclusive Development: http://dcidj.org/

Hansenologia Internationalis: http://www.ilsl.br/revista/atual.php

Indian Journal of Leprosy: http://www.ijl.org.in/index.html 

Leprosy Review: https://www.lepra.org.uk/Pages/FAQs/Category/volume-87
Leprosy Review Repository (1928-2001) : http://leprev.ilsl.br/arquivo.php

Plos Neglected Tropical Diseases: http://journals.plos.org/plosntds/
 
Revista de Leprología:
http://www.leprosy-information.org/resource/revista-de-leprologia
 
WHO Goodwill Ambassador’s Newsletter for the elimination of leprosy:
http://www.leprosy-information.org/resource/who-goodwill-ambassador-s-newsletter-elimination-leprosy 

 

 

Websites & Services

 

 

InfoNTD - Information on cross-cutting issues in Neglected Tropical Diseases (NTDs) https://www.infontd.org/

LML - Leprosy Mailing List - a free moderated email list that allows all persons interested in this theme to share ideas, information, experiences and questions.
http://leprosymailinglist.blogspot.nl/


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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Monday, November 28, 2016

(LML) Nerve Decompression in Leprosy

 

Leprosy Mailing List – November 28,  2016

Ref.:    (LML) Nerve Decompression in Leprosy

From:  Marcos Virmond, Bauru, Brazil


 Dear Pieter

 

Let me comment the message by dynamic Dr. Gajete from the Philippines and the very fine reply by Dr. Theuvenet, LML November 26, 2016.

The last relevant incursion of WHO in the field of leprosy surgery (including neve decompression) was the publication of an important book by Dr. H. Srinivasan and Dr. Dinkar D. Palande in 1996 (!) (Essential surgery in leprosy: techniques for district hospitals – WHO/LEP/96.2). I am not sure whether this book is still available or not.

Unfortunately, nerve decompression is an essential procedure that is constantly neglected in leprosy services. The reprint of WHO’s book would be a good contribution as well as any move to offer training to general surgeons willingly to learn how to perform a neurolysis. To some extend it is a simple procedure but requires adequate training, use of magnifying glasses and fine surgical instruments – besides proper indication.

Yes, it is time to put nerve surgery again on the agenda!

With many regards

 

Marcos

 

M. Virmond MD PhD

ILSL – head

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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Saturday, November 26, 2016

(LML) Nerve Decompression in Leprosy

Leprosy Mailing List – November 26,  2016

Ref.:    (LML) Nerve Decompression in Leprosy

From:  Francisca Gayete, Philippines and Wim Theuvenet, the Netherlands


 

Dear Pieter,

 

 

There is an issue which concerns the National Leprosy Control Program partcularly,in addressing our goal towards Zero Disability.

 

Is there any Training Program offered/sponsored  by GLP/WHO for  Surgeons working in Sanitaria/Partner Hospital for Reconstructive Surgery/Neural surgery? Most General Surgeons including those at the Philippine Orthopedic Center are hesitant to perform the simplest epineural decompression.

 

Our warmest regards,

 

 

Francisca Gayete

 

 

Reaction by Wim Theuvenet:

 

 

Dear Cess,

 

Zero Disability is the second greatest ambition (after the eradication of leprosy) of every committed leprologist and I am so happy that Dr Ben Naafs is putting it on the agenda again!

 

Personally I feel that apart from the earlier detection of leprosy, we can improve on;

 

1. The earliest recognition of (often silent) neuritis; 

 

2. The more successful treatment of neuritis, and amongst this:

 

3. The surgical decompression of nerves, especially when the other treatments have failed and the risk of permanent nerve function loss becomes real.

 

Answering your question: I am not aware of any official GLP/WHO sponsored courses in Reconstructive Surgery in leprosy. However, there are quite a few very experienced surgeons (I know a number of excellent colleagues in India, Nepal and Brazil) working in this field and trust that they can provide adequate training either at their leprosy hospitals or possibly at your institute

 

Personally, I have been involved in conducting these Surgical Courses in Leprosy Surgery (incl. POID) for the last 20 years, in 14 countries around the globe; mostly coordinated through The Leprosy Mission International (TLMI) and the Netherlands Leprosy Relief (NLR). There is a 3-level training format for this.

 

When you, together with the colleagues at the Philippine Orthopedic Center, see a clear need for assistance by getting this training, you are welcome to “Ring the Bell”!

 

 

With best regards,

 

 

Wim

 

 

Willem Theuvenet, M.D., Ph.D

Plastic, Reconstructive and Hand surgeon (FESSH)

Consultant for TLMI and NLR

Mail: WimTheuvenet1@gmail.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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