Tuesday, December 24, 2019

FW: (LML) ENL and pregnancy and ITOL


 

Leprosy Mailing List – December 24,  2019

Ref.:   (LML)  ENL and pregnancy and ITOL

From:  Ruth Butlin, London, UK


Dear Pieter,


It has been interesting to read the recent discussions about managing ENL reaction during pregnancy.


There is a dearth of evidence-based guidelines on this subject, as noted in our chapter, Mothers and children with leprosy, in the on-line International Textbook of Leprosy (ITOL). I would like to appeal to readers of LML to see if any of them could fill the evidence gap by undertaking some studies on the epidemiology and treatment & outcomes of Leprosy Reactions in Pregnancy and the Puerperium.. Only by detailed studies, using representative samples and following up cohorts of women of child-bearing age, will we understand the problem.


For readers unfamiliar with the International Textbook of Leprosy, I would recommend they go to www.internationaltextbookofleprosy.org and look through some of the chapters. More chapters are still being added and, in time, all will be updated as important new information becomes available. The ITOL is "open access", free of charge, so can be consulted by anyone with internet access, and individual chapters can be downloaded as pdfs for reading at leisure on one's own computer.

 

Yours sincerely,


C Ruth Butlin

(joint author, with Steve Withington, of chapter on "mothers and children with leprosy" in the special clinical circumstances section of ITOL)


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

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

Contact: Dr Pieter

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FW: (LML) The right place for putting forward views?

 

Leprosy Mailing List – December 24,  2019

Ref.:   (LML)  The right place for putting forward views?

From:  Ruth Butlin, London, UK


Dear Readers,


The editor said in a recent posting that "LML is an open forum and anyone, also those not directly involved in research settings, may offer his/her weighted opinion, based on sound argumentation ..... All voices should be heard....." (LML 24.10.19).


Personally, I really appreciate the contribution to exchange of opinions and ideas and information that LML has made over many years by serving as an easily accessible forum for discussions conerning diverse aspects of leprosy. The wide variety of contributors is one of its strengths. The range of topics covered has been amazing. I agree wth Geoff Warne (LML 9.10.19), who said "I find LML a good venue for the sharing of opinions on leprosy related topics…"


Some contributors apparently test out their ideas by an LML posting, then write up a formal paper for submission to a journal, taking into account helpful feedback from readers of LML. This can work well, and may be of especial value to those working in more isolated situations who lack specialist colleagues with whom to have serious technical discussions face to face.


Although the content is moderated, LML remains in effect a Discussion Group for those who chose to join. Any really important results or proposals or well-founded opinions need to be published in a recognised journal if they are to carry weight in scientific circles. The advantages of such publication are as follows:


1.
Peer-review. Having been peer-reviewed, the article which is accepted for publication has a priori some extra credibility. A reputable journal will enlist as reviewers experienced people who have carried out their own studies and had papers published in a similar area of work, who are able to consider the manuscript impartially, and offer advice to the editor on its merits or faults as well as its suitability for that particular journal. So, people reading the journal can have confidence in
the quality of published papers.

 

For the authors the other advantage of peer-review is that, often, answering the points raised by reviewers helps them to improve their paper.


2.
Citability and retrievability. Once a paper has been published in a journal it is possible to cite it in other writing, knowing that the original can be found in the public domain and checked. When someone else is doing a formal literature review using a search engine such as PUBMED or MEDLINE, he or she should be able to trace and obtain the paper, in order to utilise its message.


Articles in LML, like free papers presented at conferences, would not normally appear in a literature search and may not be accepted by every journal as citations in the reference list of a scientific paper. Similarly, when applying for a research grant (or a job) one may need to list Publications to demonstrate one's ability. For such purposes, papers published in scientific journals will be of more value than contributions (however good) to a discussion group or a conference.


3.
Availability in libraries. Academic libraries will hold permanent collections of scientific journals which are considered to be of good quality.


I would like to appeal to respected fellow contributors to LML to consider also subsequently submitting their articles to any of the peer-reviewed journals. Similarly, all those who contributed good posters and oral presentations at the recent ILC, please write up your studies for Journals if you have not yet done so! Thus (as Geoff Warne put it, LML 9.10.19) your "views move beyond one person's professional opinion to becoming part of the scientific body of literature".


Not everything which is suitable for LML is relevant for a journal, sometimes people are disseminating news (eg about forthcoming meetings, or recent publications) or asking questions or seeking advice on specific clinical problems.


In conclusion, LML is valuable but it is not a Journal: "Leprosy Mailing List is a free moderated email list that allows all persons interested in this theme to share ideas, information, experiences, questions". (from LML website, quoted Pieter Schreuder, LML 24.10.19 )

 

C Ruth Butlin

Author credentials: Having worked as a clinician managing leprosy in
endemic countries for over 25 years, I have also been involved in research and in
leprosy-related teaching for health workers.

 

Conflict of interest declaration: I am a member of the Editorial Board
of Leprosy Review.


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: (LML) Happy Holidays and a Prosporous 2020

 

Leprosy Mailing List – December 24,  2019

Ref.:    (LML) Happy Holidays and a Prosperous 2020

From:  Maria Leide, Rio de Janeiro, Brazil


Dear Colleagues,

 

 

I wish everyone on the list and especially the coordinators and my dear friend Pieter a very merry Christmas , wherever in the world one should be, and a productive 2020 for all of us !

 

Maria Leide W. Oliveira

FM/HUCFF/UFRJ

 

Note editor: Happy Holidays and a Prosperous 2020 on behalf of the Editorial Board of LML


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, December 21, 2019

FW: (LML) Message from the Special Rapporteur

 
 

Leprosy Mailing List – December 21,  2019

Ref.:    (LML) Message from the Special Rapporteur

From:  Alice Cruz, Quito, Equator


Dear friends,


My mandate worked hard during 2019. I wish to specially thank my team for the expertise and commitment! Among several positive and encouraging outcomes, I highlight the following ones:

We ensured the mainstreaming of Hansen's disease into ALL the UN human rights mechanisms. With cooperation from key civil society organizations and the Permanent Missions to Geneva of partner countries, Hansen's disease was included in the work of the Universal Periodic Review, Treaty Bodies and Special Procedures. Rachna and Faustino spoke, with great courage, on behalf of persons affected at Palais des Nations, Geneva, during the forty-first session of the Human Rights Council.


The official visit to Brazil is already producing very positive outcomes. As an example, after my visit, both the Federal and Regional Public Defenders' Offices, as well as the Public Attorney's offices adopted a more robust action in close partnership with the Brazilian national movement of persons affected – MORHAN. This is an important step towards recognition, justice and rights' enforcement.


We've partnered with different International and Regional Human Rights Mechanisms and public health organizations, UN agencies and the Global Partnership for Zero Leprosy in order to promote a human rights approach to Hansen's disease. We've succeeded in giving voice to persons affected and their family members, with the support of key stakeholders and organizations, on my 2019 thematic report to the Human Rights Council, which was informed by more than 600 contributions from all over the world.

 

Finally, I had the honour and privilege to be both a witness and a participant of the emergence of a global voice of persons affected, which was reflected on their statement presented at the International Leprosy Conference in Manila, as a result of the Global Forum of the People's Organizations on Hansen's disease, sponsored by Sasakawa Health Foundation. My best hope for a world free of Hansen's disease related discrimination lies in the organizations of persons affected and their representatives!


We end the year with gratitude and hope. And we prepare the beginning of the new year with testimonies from persons affected and impacted individuals. Check their wish list for 2020 at the beginning of the year on my social media!

 

Alice Cruz

Facebook of the Special Rapporteur: https://www.facebook.com/srleprosy/

Tweeter of the Special Rapporteur: https://twitter.com/srleprosy

Instagram of the Special Rapporteur: https://www.instagram.com/specialrapporteurleprosy/?hl=pt 

 

Website: www.ohchr.org/EN/Issues/Leprosy/Pages/LeprosyIndex.aspx

Email: srleprosy@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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Wednesday, December 18, 2019

FW: (LML) ENL and pregnancy


 

Leprosy Mailing List – December 18,  2019  

Ref.:    (LML) ENL and pregnancy

From:  Maria Angela Bianconcini Trindade, São Paulo, Brazil


Dear Pieter,


Two articles may be relevant to the question by Annick Mondjo, LML, 17-12-2019, "Could these ulcerated lesions be a Lucio phenomenon?":

 

-       Ulcers in leprosy patients, an unrecognized clinical manifestation: a report of 8 cases. Miyashiro D, et al. BMC Infect Dis 2019. PMID 31783808

 

-    Concomitant lucio phenomenon and erythema nodosum in a leprosy patient: clues for their distinct pathogeneses. Benard G, Sakai-Valente NY, Bianconcini Trindade MA Am J Dermatopathol. 2009;31(3):288–292. doi: 10.1097/DAD.0b013e318193c74c. 

 

Best wishes,

 

Maria Angela Bianconcini Trindade

Leprologiost, Casa de Clinicas

University Hospital

São Paulo, Brazil



Note Editor: If you would have problems finding and downloading these articles you can contact INFOLEP.


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

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

Contact: Dr Pieter Schreuder  editorlml@gmail.co

 

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Tuesday, December 17, 2019

FW: (LML) Announcement LRI call for proposals

 

 

Leprosy Mailing List – December 17,  2019  

Ref.:    (LML) Announcement LRI call for proposals

From: N. de Bruijne, Amsterdam, the netherlands




Dear all,

 

The Leprosy Research Initiative (LRI) is pleased to announce a call for proposals for funding commencing in 2021. LRI funds research with a focus on leprosy – including research applications combining leprosy with other neglected tropical diseases (NTDs) or other diseases that share cross-cutting issues with leprosy.


Eligibility criteria:

  • The main topic of the study must fall within one of the agreed priority areas (www.leprosyresearch.org).
  • Research results must be directly applicable to leprosy services or to the wellbeing of persons affected by leprosy.
  • Preference will be given to proposals from or in close collaboration with institutions or organisations in endemic countries.
  • Project duration must not exceed four years (48 months).
  • A typical project budget does not exceed €50,000 per year, but certain biomedical research projects may be eligible for supplemental funding.

In addition to the eligibility criteria, this year the LRI has a particular interest in studies which include specific strategies to improve the participation of persons affected in research and in studies which are in support of PEP implementation (across all priority areas).


Please note that salary costs of senior researchers in non-endemic countries will only be supported to a limited extent (normally to a maximum 0.1 fte).


Researchers interested to apply for funding by the LRI are invited to complete and submit a Letter of Intent (LoI), giving an outline of the intended research. The LoIs should be submitted using the LRI Grant Application portal – which can be accessed via https://leprosyresearch.flexigrant.com/.

 

LoIs should be submitted by February 28th, 2020 at 23:59 (Amsterdam date and time) after which the application portal will be closed. We strongly advise you to take sufficient time to enter all the required data in the system.


LoIs will be screened by the LRI Steering Committee (SC). If the feedback by the SC is positive, the applicants will be invited to submit a full proposal before the next deadline (June 1st, 2020).


With kind regards,


The LRI team

Email: info@leprosyresearch.org

Leprosy Research Initiative (LRI)


Postbus / P.O. Box 95005
1090 HA Amsterdam
The Netherlands

Tel:

+31 20 5950525

Email:

n.debruijne@leprosyresearch.org

Web:

www.leprosyresearch.org


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

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

Contact: Dr Pieter Schreuder  editorlml@gmail.co

 

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FW: (LML) ENL and pregnancy

 

Leprosy Mailing List – December 17,  2019 

 

Ref.:    (LML) ENL and pregnancy

From:  Annick Mondjo, Libreville, Gabon


 

Dear Peter,

Following the sharing of severe ENL images in pregnancy (LML, 16-12-2019),
thanks for it and for all the previous comments about this difficult topic
but should like to ask two questions:

1) Could these ulcerated lesions be a Lucio phenomenon?

and if so, is the course of action formulated in the previous answers still valid.

2) In order to better respect confidentiality

would it be possible to blur or hide part of the patient's
and/or family members' faces on all the PowerPoint slides
and then secure the file in pdf format before sharing?

 

Best regards,

 

Dr Annick Mondjo
Leprosy Program  Manager
Libreville, Gabon

 


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

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

Contact: Dr Pieter Schreuder  editorlml@gmail.co

 

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Monday, December 16, 2019

FW: (LML) ENL and pregnancy


 

Leprosy Mailing List – December 16,  2019 

 

Ref.:    (LML) ENL and pregnancy

From:  Arry Pongtiku, West Papua, Indonesia


 

Dear Pieter,

 

 

By attached file the pictures which belong to my LML letter of December 12, 2019.

 

 

Salam,


Arry Pongtiku,MD, MHM, PhD

former Indonesia Leprosy National Adviser /NLR

 


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

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

Contact: Dr Pieter Schreuder  editorlml@gmail.co

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Thursday, December 12, 2019

FW: (LML) ENL and pregnancy

 

Leprosy Mailing List – December 12,  2019 

Ref.:    (LML) ENL and pregnancy

From:  Arry Pongtiku, West Papua, Indonesia


 

Dear Pieter,

 

Good morning.

 

Thank you to share a case of dr Ramesh Sharma (LML December 6, 2019) and comment from dr Wim (Dec 8, 2019). I would resend my comments.

I remember when I talked to dr Emmy Syamsoe, an Indonesian leprosy expert and senior dermatologists. I said to her "many doctors still underestimate leprosy cases", she replied:" they must find difficulties if they handle recurrent/chronic reaction (ENL). Leprosy cases can not be underestimated."

 

First of all, I would also say using Thalidomide is not the choice for pregnancy.  I would like to share some of my experiences.

 

I firstly learned a case of ENL in the late pregnancy in 2007, the patient with madarosis and saddle nose (late diagnosis) got severe ENL two weeks with ulceration/wound before delivery. She was very sick. She admitted to hospital for delivery baby, however, unfortunately, her baby died. I came to hospital because I hear she was not treated well and people/nurses scare of leprosy or avoided. When I visited, the wounds were opened as an attachment. She said dr Arry "I do not want to die I have two children, even I did not believe I said you will be all right. We gave her antibiotic and I teach her husband how to do wound care.

 

We gave her a milk (Pedi sure), the milk with high protein for children/elderly and suggest more acceptable. MDT continued. One dermatologist said to give prednisone/steroid, I replied: "are you sure to give steroid in open wound?". Finally did not give steroids, just Pediasure milk and MDT and antibiotic, wound care run by her husband. ----successful.  6 months after cure, her husband, wants to marry another woman and living with a woman for 2 years, eventually not allowed to marry because he is a soldier/army.  Psychological pressure and pregnancy are stress factors/triggered that should be considered.

 

I also experienced a new couple, just married and his wife got ENL reaction two years, good status/good economy, the patient felt to suicide and hopeless and her sister wanted to have her husband. She was disappointed. She was crippled and very thin, anaemia. I visited her several time at home, dental problems, anaemia have been fixed it ,  they also moved another house, I also advised to postpone pregnancy. The patient improved and getting better even in a wheelchair, she comes to the office for fingerprint. We treated them with prednisolone protocol/tapering off and high dose lamprene protocol for ENL.  However, unexpectedly she was pregnant, she got severe ENL reaction during pregnancy, we have treated them again. She successfully delivered a baby with Sectio Cesaria, her baby girl name "Miracle", 6 months later I hear the patient died.  The baby grows well.

So phycological stress and pregnancy for leprosy patients should be considered it is a double stress.

 

I also found two reversal reaction cases of new leprosy detected during late pregnancy. We gave her MDT and prednisolone. They were more settled after delivery.

 

Pregnancy is a trigger factor of Reaction. MDT treatment make leprosy bacteria detached/ granular follow to a systemic blood circulation might be recognized as foreign bodies, may be a trigger factor of reaction.

 

Conclusions:

 

-We must consider any triggering factor of leprosy reaction.

-ENL protocol: prednisolone tapering off and high dose lamprene. Suggest prednisolone schedule make it shorter than RR protocol.

- Protocol for special cases must be established, for such ENL during pregnancy, leprosy and AIDS patients not infrequently we find in the field must have Standard Protocol

 

Thanks, dr Rames Sharma we pray for wisdom and for your case.

 

Salam,

Arry Pongtiku,MD, MHM, PhD

former Indonesia Leprosy National Adviser /NLR

 


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

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

Contact: Dr Pieter Schreuder  editorlml@gmail.co

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FW: (LML) ENL and pregnancy

 

Leprosy Mailing List – December 12,  2019 

Ref.:    (LML) ENL and pregnancy

From:  Diana Lockwood, London, UK


Dear Pieter,


Thanks for this interesting discussion.

I agree with Barbara Stryjewska that these patients are very difficult to manage.

 

Using the ENL severity scale to assess the different components of the ENL and its severity will be very helpful for managing this woman. The scale has 10 different components that are measured on a 4 point scale. It will allow assessment of response to treatment.  I attach the scale as a separate document.

  1. I would manage the patients with steroids and encouragement. She will need monitoring for steroid related adverse effects.
  2. The ENL will fluctuate anyway. It may decrease as her pregnancy progresses because of pregnancy related immune-suppression. 
  3. Clofazimine will only have a weak effect in ameliorating the ENL.

 

Diana NJ Lockwood

Retired leprologist

London School of Hygiene & Tropical Medicine

London

UK


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

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

Contact: Dr Pieter Schreuder  editorlml@gmail.co

 

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