Sunday, February 28, 2016

(LML) 19th International Leprosy Congress Beijing 2016

 

Leprosy Mailing List – February 28,  2016

Ref.:    (LML) 19th International Leprosy Congress Beijing 2016

From:  Helen Roberts, West Bengal, India


Dear Editor,

 

With reference to the request by Dr. Ben Naafs (February 4, 2016) regarding topics for the “Workshop on Clinical Leprosy” during the coming ILC Beijing 2016, I would like to propose the following questions:

 

1.    The cardinal signs of Leprosy for diagnosis needs revision?
-  Skin smear is not at primary health level.
-  Many present with sudden onset of weakness/paralysis with no nerve pain.
-  Diffuse infiltration with absence of areas of anesthesia can go undiagnosed for a longtime till they develop visible deformity.


2. Most patients develop deformities after completing fixed MDT: Follow up      mechanisms for prevention of deformity to be clearly spelt, especially those at high risk.

 

Regards,

Dr. Helen Roberts


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, February 26, 2016

(LML) 19th International Leprosy Congress Beijing 2016

Leprosy Mailing List – February 26,  2016

Ref.:   (LML) 19th International Leprosy Congress Beijing 2016

From:  Karthikeyan, Vellore, Tamil Nadu, India


 

Dear Dr. Schreuder,

 

 

We also had similar problem in submitting abstracts but since last week the site is opening well. The ILC site opens better when we access through LAN cable than Wi-Fi. We managed to submit over 15 abstracts.

 

Best regards,

 

Karthikeyan G,
MPH- Scholar

Christian Medical College | Vellore - 632002 | Tamil Nadu.
Contact No: +91 8124611941 | Skype: karthikeyan.ot 


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

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(LML) 19th International Leprosy Congress Beijing 2016

Leprosy Mailing List – February 26,  2016

Ref.:   (LML) 19th International Leprosy Congress Beijing 2016

From:  Shuang Yang, Beijing, China


 

 

Dear Schreuder,

 

 

Thanks for your concern regarding ILC2016, especially the submission of abstracts.

In answer to the email from Linda Lehman of February 24, 2016: “Can the ILA organizers please explain why there is so much difficulty submitting abstracts and registering.  I have been trying all day and I imagine others are having similar problems.  The deadline is for Feb 28th but if people are experiencing what I have all day, they may miss the deadline.” I would like to say the following:

 

One could also forward one’s abstract to me in a word document (syang@ciccst.org.cn), I can assist to finish the submission. By the way, please confirm me the topic number, in order that I can choose for him/her in the system

 

 

Best regards,

 

Shuang Yang

syang@ciccst.org.cn


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

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

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Wednesday, February 24, 2016

(LML) NLEP Newsletter-Inaugural Issue

Leprosy Mailing List – February 24,  2016
Ref.:  (LML)  NLEP Newsletter-Inaugural Issue
From:  Antil Kumar, New Delhi, India


Dear All,
Greetings from CLD (Central Leprosy Division), Ministry of Health & Family Welfare, India.
We are pleased to inform you that National Leprosy Eradication Programme (NLEP) has ​released Quarterly Newsletter on ​ the occasion of Anti Leprosy Day i.e.​         3​0th  January, 2016 .Th​is issue of the NLEP newsletter may be seen by clicking on the following link http://www.nlep.nic.in/pdf/NLEP%20Newsletter%20inaugural%20Issue.pdf
I hope that you will find newsletter useful and look forward to your feedback. 
Please find attached copy of NLEP Newsletter for your ready reference.

With regards,
Dr. Anil Kumar
DDG (L)


LML - S Deepak, B Naafs, S Noto and P Schreuder
Contact: Dr Pieter Schreuder << editorlml@gmail.com


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(LML) 19th International Leprosy Congress Beijing 2016

Leprosy Mailing List – February 24,  2016

Ref.:    (LML)   19th International Leprosy Congress Beijing 2016 

From:  Shuang Yang, Beijng, China


Dear Pieter, 

 

Regarding the ILC2016, we received inquiries about the so-called “affiliation number”:

In the abstract submission there is a section named ‘Organization of Authors’ where you can give details of the organization of the authors, but if the authors come from more than one organization then the details of each organization should be entered and each organization is given an affiliation number starting with number 1.  The next section asks for the details of each author including the affiliation number from the section ‘Organization of Authors’, if all the authors come from the same organization then the affiliation number will be 1.  If authors come from different organizations listed under ‘Organization of Authors’ then the affiliation number for each author will refer to the affiliation number of their own Organization. 

If any of the LML readers needs to know more about the congress, just feel free to contact me.

Best regards,



Ms. Shuang Yang

syang@ciccst.org.cn

Fax: +86 10 62174126


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

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Sunday, February 21, 2016

(LML) WHO Goodwill Ambassador's Newsletter No.77 Issue

Leprosy Mailing List – February 21,  2016

Ref.:   (LML)  WHO Goodwill Ambassador's Newsletter No.77 Issue

From:  Hiroe Soyagimi, Tokyo, Japan


Dear Dr Schreuder and Friends,

 

Warm greetings from Sasakawa Memorial Health Foundation in Tokyo. We have uploaded our latest edition of "WHO Goodwill Ambassador's Newsletter No.77 Issue" to our website. Please visit http://www.smhf.or.jp/e/ambassador/index.html to obtain electronic version of this issue. 

In this issue we feature articles about ...

Message: Speaking Up for Elimination

Interview: Flexibility Is Key

Human Story: Sisters United

Briefing:  Small Islands, Big Challenges

Ambassador's Journal:  Journey to the South Pacific

News:  Leprosy history as human Heritage

From the Editors:  Fresh Perspectives

 

We hope you enjoy our latest Newsletter!

 

Hiroe Soyagimi

Sasakawa Memorial Health Foundation

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

Sasakawa Memorial Health Foundation

Tel03-6229-5377 

Fax03-6229-5388

email: smhf@tnfb.jp

visit our website at http://www.smhf.or.jp/

facebook  https://www.facebook.com/smhftokyo


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

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Saturday, February 20, 2016

(LML) In Memoriam Dr. Srinivasan

Leprosy Mailing List – February 20,  2016

Ref.:    (LML) In Memoriam Dr. Srinivasan 

From:  Maria Leide de Oliveira, Rio de Janeiro, Brazil


 

Dear Pieter and LML Colleagues,

I have wonderful memories of Dr. Srinivasan: our first contact during our trip to the Indian countryside for the National Leprosy Program independent evaluation in the beginning of the nineties, his visit in Brazil in the end of the nineties and our last meeting in Hyderabad International ILA Congress in 2008.

I am happy to have had the opportunity to work and learn with him

My sincere condolences to his family. 

 

Maria Leide W. de Oliveira


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) In Memoriam Dr. Srinivasan

Leprosy Mailing List – February 20,  2016

Ref.:    (LML) In Memoriam Dr. Srinivasan 

From:  PK Das, Birmingham, UK


 

Dear Pieter,


This note is to express my respect and condolence to the family and friends of Dr Shrinivasan and like to convey the sweet memories of myself and my wife Lucie, of our first meeting with this hermit like gentleman with full of wisdom.

 

We met Dr Shrinivasan at his unpretentious home (the staff residence) in JALMA in 1981, my first visit to JALMA, when Dr Shrinivasan was the director of the institute. What was striking is that in contrast to the other scientific staff his living and his whole persona was so simple and humble, his conversation was so gentle (in contrast to mine). I felt like touching his feet and tell him out loud: “I am humbled in front of you and please convey me some basics of this terrible disease leprosy”, despite the fact that I already formed my own idea (right or wrong) and had made my strategy how to look into the mystery of this disease. I shared my idea with him and also expressed my fear that I may end up with frustration. His words, "please go ahead, do your bits like Lord Krisna instructed Arjuna, Bhagabat Gita and if you face frustration, be it and the consolation will be you gave it a try”.


The bottom line is that I have ended up in frustration. Though several publications appeared and some were regarded by some pundits as ground breaking, I remain frustrated and cynical. In the midst of frustration and cynicism, I remember Dr Shrinivasan with great compassion and affection and reverence. I pray for his soul in eternity.


My best regards for a hermit.


Pran


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, February 18, 2016

(LML) In Memoriam Dr. Srinivasan

Leprosy Mailing List – February 19,  2016

Ref.:   (LML) In Memoriam Dr. Srinivasan 

From:  Pieter Schreuder, Maastricht, the Netherlands


Dear LML readers,

We like to refer to the question of Dr. P. Narasimha Rao (LML, February 17, 2016) about information as to how to get Dr Srinivasan's famous publication   “Prevention of Disabilities in Patients with Leprosy" published by WHO.

Jannine Ebenso, Head of Quality Assurance, the Leprosy Mission International, Middlesex, UK, Dr. Irmgard, College of Health Sciences, Division of Tropical Health and Medicine, James Cook University, Townsville, Queensland, Australia, and Jiske Erlings, INFOLEP, Amsterdam, the Netherlands, write that the book is available on the WHO website http://apps.who.int/iris/handle/10665/41226

Jiske Erlings , INFOLEP, also writes that they have a large collection of publications by Dr Srinivasan at INFOLEP. You can click here for an overview: http://www.leprosy-information.org/biblio_search/search?f%5B0%5D=sm_biblio_contributors%3ASrinivasan%2C%20H&advanced=true&solrsort=ds_biblio_year%20desc

Please contact INFOLEP (InfoLep@Leprastichting.nl) if you would like to receive the pdf versions of selected publications.

We thank Jannine Ebenso, Dr. Imgard and Jiske Erlings for their prompt reaction.

 

Best wishes

 

Pieter AM Schreuder

Editor LML 


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

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(LML) 19th International Leprosy Congress Beijing 2016

Leprosy Mailing List – February 19,  2016

Ref.:  (LML)   19th International Leprosy Congress Beijing 2016   

From:  Cairns Smith, Aberdeen, the Netherlands


Dear Pieter,

I would like to refer to the letter by Wim Theuvenet (LML, February 16, 2016}. It is great to learn of all the innovative work in surgical training and hand therapy that Wim has been doing.  We would encourage him and other surgeons to submit abstracts of the findings of their research and long-term outcomes to the relevant sessions on reactions, nerve injury, nerve function, impairments and rehabilitation at the Congress. 

I had some positive comments from India the last few days that the congress website was working well and they had no difficulty submitting abstracts.

The information of the abstract deadline extension is now on the website front page. The deadline has been extended until 28th February for the submissions.


With best wishes,

Cairns


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) 19th International Leprosy Congress Beijing 2016

Leprosy Mailing List – February 18,  2016

Ref.:  (LML)   19th International Leprosy Congress Beijing 2016   

From:  Ben Naafs, Munnekesburen, the Netherlands


 Dear Pieter,

I cannot agree more with Wim Theuvenet (LML, 16 February 2016). Leprosy without nerve involvement would be an innocent skin disease.

 

I also agree with the fact that there is too much emphasis on early diagnosis and treatment, forgetting clinical diagnosis and careful follow up and when needed extra treatment. Most of the money goes in laboratory tests and the use of these tests in the field in the hope that they will work, and not in teaching and patient care during (and after) treatment. In most places there is only limited care for people suffering from the sequelae of leprosy and there is where reconstructive surgeons should come in.

 

Control managers are preoccupied with point of care tests because they are not (anymore) working in the field and do net see the reality: patients damaged due to lack of clinical knowledge, lack of basic care and  interest.

 

Was it not Lenin who stated that good doctors should never become party members?  They feel for the individual and not for the general problem. Communism lost from individualism. I do not think that is the solution. But the present “market” leaders should ask themselves why do we fail and what can we do better. Should we look more after the individual?

 

As you may have noticed I got to organize a workshop on clinical problems. These clinical problems are akin to the problems Wim Theuvenet indicated. It may be a step forward to ask the organizers to allow Wim to organize a workshop on “surgical problems after being “cured” of the bacteriological disease leprosy.

 

Hoping to see Wim and his fellow reconstructive surgeons in Beijing.

 

 

From Tanzania, teaching skin diseases and foremost clinical leprosy.

 

 

Ben

 

PS. I am not like Monsanto effective killing the bees.

 


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) Cyclosporine and Azothioprine for leprosy reactions

 

                                                        Leprosy Mailing List, February 18, 2016

Re: (LML)  Cyclosporine and Azothioprine for leprosy reactions

From:  Jaison Barreto, Bauru, Brazil


 

Hello colleagues,


Greetings from "Lauro de Souza Lima" Institute, Bauru, São Paulo, Brazil, the National Leprosy Referral Centre.

Well, I am a collaborator to the Brazilian Ministry of Health, and we are finishing the edition of the New Guide for the Management and Treatment of Leprosy in our country.

In this new document, which will be published soon, we intend to release cyclosporine and azathioprine for reactions, mainly when prednisone or other steroids are not indicated. I also know that there are some papers published in literature which show the efficacy for the use of these drugs.

For this reason, I would like to know if you know any country where these drugs are allowed / available for the treatment of leprosy reactions. I am asking because I did not find the answer in the WHO Leprosy Guides.


Best regards,



Jaison

Dr. Jaison A. Barreto, MD, PhD

jaisonbarreto@gmail.com


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

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Tuesday, February 16, 2016

LML) In Memoriam Dr. Srinivasan

Leprosy Mailing List – February 17,  2016

Ref.:    LML) In Memoriam Dr. Srinivasan 

From:  Narasimha Rao, Hyderabad, India


 

 

Dear Pieter,

 

 

It is indeed a touching and personal mail written by dear friend Robert Jerskey in memory of Dr H Srinivasan.  Dr Srinivasan was a giant of a person in the field of leprosy. With his passing away, a treasure trove of leprosy surgery and rehabilitation is lost forever! 

 

I would like to know from members whether any one has information as to how to get Dr Srinivasan's famous publication   “Prevention of Disabilities in Patients with Leprosy" published by WHO. I would be very grateful if someone can help me get a copy of it, either a pdf version or hard copy.  

 

 

With best regards

 

 

P. Narasimha Rao

 

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

 

B-48, Income tax colony, mehdipatnam, 

Hyderabad 500028, India

 

Mobile-91-9849044898

 

 

Note editor:

May I remind the LML readers of the request by Robert Jerskey of February 15, 2016: “I am preparing a montage of photos and reminiscences to present to the family of Dr. Srinivasan.  I invite any of the readers who might wish to share a photo or memory to respond.   One can also email me at my yahoo address below, or alternatively, by postal mail to my postal address. robjerskey@yahoo.com

 


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

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(LML) Bonfire of nerves

Leprosy Mailing List – February 17, 2013

 

Ref.:    (LML) Bonfire of nerves

From:  Joel Almeida, Mumbai and London


 Dear Pieter,

 

In response to the enquiry from an LML colleague:

 

1. An overview

M. leprae may be viewed as an arsonist which survives outside human hosts, but ignites inflammation in the nerves of many infected persons.   We need to put out the fires within nerves before permanent damage; and we need to suppress M. leprae.  Sufficient funding and skilled personnel are required.

 

2. Holes in our defences

Currently, we have eliminated the “fire brigade”.  The firemen are the skilled leprosy workers who can visit leprosy patients near their homes.  These skilled workers can monitor nerve function and ensure prompt anti-inflammatory treatment.  About 85% of the nerve function impairment is “silent”, without physical signs or symptoms of inflammation ([i]).  Therefore patients cannot be relied on to complain in time.  We need, urgently, to train and appoint these skilled leprosy workers. Otherwise, in India alone, as many as 300,000 people (50% of multibacillary patients) will newly suffer permanent nerve damage and visible deformity over the next 10 years.

 

The largest number of people currently susceptible to M. leprae is probably polar lepromatous patients.   They have almost no specific immunity, and show a very high bacterial load in skin smears.  They require prolonged treatment.  Instead, they currently receive only a year or less of protection against M. leprae.  After that they remain vulnerable to the proliferation of endogenous or exogenous M. leprae.  This is not their fault.  It is our fault.

 

M. leprae flourishes, and people suffer visible deformity, because of our easily avoidable “own goals”. We have bred the “arsonist”, M.leprae, by withdrawing anti-microbial treatment from “polar lepromatous” patients and eliminating skin smear services.  And we have eliminated the “fire brigade”: the skilled leprosy workers who can monitor nerve function.  The people of India pay a heavy price for our policy errors, in terms of a “bonfire” of human nerves.  We can correct the errors.

 

3. Environmental M. leprae

According to the literature, if you visit and stay in the home of Indian leprosy patients already treated with MDT, your risk of developing disease is multiplied several-fold compared to the local population's risk [ii]. This remains true after the patients have apparently been "cured" by MDT.

 

M. leprae, when dried in the Indian shade, remain viable for up to 5 months [iii]M. leprae ingested by amoebae remain similarly viable for at least 8 months [iv].  If an individual with low specific immunity comes into contact with such M.leprae, replication can resume. The cycle of transmission can be maintained indefinitely even if M. leprae do not replicate outside hosts. The duration of extra-human survival may prove to be longer than 8 months, if more prolonged studies are undertaken.  In Norway, a phenolic glycolipid specific to M. leprae was found in the environment decades after the last human case [v].  It seems prudent to presume that dried M. leprae, which measure under 10 microns, can become airborne along with other dust.  It is not necessary for an infectious patient to sneeze directly into your face. Similarly, it seems prudent to presume that water-borne M. leprae can eventually reach susceptible humans.  It is not necessary for an infectious patient to rub M. leprae into your skin abrasions.

 

Our claims and promises about interrupting transmission deserve to be tested robustly and rapidly on a small island with a relatively high incidence rate of leprosy. Otherwise we might become so pre-occupied with “pie in the sky” that we neglect to “pluck low-hanging fruit.”

 

4. The burden of leprosy

"Burden of disease" has a very specific meaning in the scientific community. It has a clear unit of measurement for non-fatal conditions: YLD (years lived with disability).  YLD is defined as "the prevalence of each sequela multiplied by the relevant disability weight adjusted for comorbidity." ([vi]) Other usages of the term "burden" place leprosy patients at a disadvantage relative to those afflicted by other diseases.

 

The “burden of leprosy”, by this standard definition, has increased during the past 30 years and continues to increase.  This fact will help us more easily to mobilise the necessary political commitment and funding to fight leprosy.

 

We also need to re-examine our claims about prevalence.  Most of the 5 million plus “leprosy patients” in 1985 had been smear negative for years or even decades.  Many of them did not require any further anti-microbial treatment.  By current definitions, they were already “cured.”  In areas with rapid socio-economic advances, or rapid de-forestation, the incidence of leprosy is known to decline. Elsewhere, changes in prevalence are largely cosmetic, owing to decreased duration of MDT. The bottom line is that we score an “own goal” if we continue to use non-standard definitions of "burden of leprosy".

 

5.  Moving forward

 

Let’s unite now to prevent permanent nerve damage and visible deformity among 300,000 more Indians over the next 10 years.  Let’s measure, report and reduce the number of patients who newly develop visible deformity during the first 2 years after the start of MDT.  Let’s identify polar lepromatous patients upon diagnosis, and ensure their long-term protection against M. leprae. Let's not be content with claims and promises about interrupting transmission, but launch a robust test on a small island.  Let’s use the standard definition of “burden of disease”.

 

At all times, let's keep our eyes firmly fixed on the bonfire of human nerves, which we can stop.

 

Regards,

 

Joel Almeida


References

[i] Richardus JH et al. Incidence of acute nerve function impairment and reactions in leprosy: a prospective cohort analysis after 5 years of follow-up. Int. J. Epidemiol. (2004) 33 (2): 337-343.

[ii] P. Vijayakumaran et al. Does MDT Arrest Transmission of Leprosy to Household Contacts? Int. J. Lepr. (1998) 66(2): 125-130.

[iii] Desikan KV, Sreevatsa. Extended studies on the viability of Mycobacterium leprae outside the human body. Lepr Rev. 1995 Dec;66(4):287-95.

[iv] Wheat HW et al. Long-term Survival and Virulence of Mycobacterium leprae in Amoebal Cysts. PLoS Negl Trop Dis. 2014 Dec; 8(12): e3405

[v] Kazda J, Irgens L, Kolk A. Acid fast bacilli found in sphangnum vegetation of coastal Norway containing Mycobacterium leprae specific phenolic glycolipid-I. Int J Lepr. 1990;58:353-357.

[vi] Murray et al, GBD 2010: design, definitions, and metrics (comment). The Lancet Vol 380 December 15/22/29, 2012, pages 2063-2066.

 


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

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

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(LML) 19th International Leprosy Congress Beijing 2016

Leprosy Mailing List – February 16,  2016

Ref.:  (LML)   19th International Leprosy Congress Beijing 2016 

From:  Wim Theuvenet, Apeldoorn, the Netherlands


 

Dear Pieter,

 

Recently,  I returned from a surgical training / hand therapy course in one of the countries where leprosy is still “a problem”. Together with a team of local doctors we operated on a great number of patients and visited 2 leprosy hospitals. Was again struck by the devastating consequences of leprosy neuritis with the majority of patients being admitted having serious foot and hand problems!

 

Is neuritis not the most serious complication of leprosy (with directly hereafter eye problems and nasal bridge collapse)?? Would without neuritis, leprosy not be a totally different disease?

 

Have scrolled with anticipation through the upcoming ILC program in Beijing. In the program there is one session on reactions and nerve injury and no session on reconstructive surgery. Reconstructive surgeons try to mop up the consequences in the many patients where our medical treatment of leprosy neuritis failed. 

 

Can it be that the upcoming ILC is organized by and for leprologists from another planet!??

 

With best regards,

 

Wim Theuvenet


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

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