(LML) Judith Bell-Krotowski

Leprosy Mailing List – October 29,  2013 

Ref.:    (LML)  Judith Bell-Krotowski

From:  David M. Scollard, National Hansen’s Disease Programs, USA

             Marcos Virmond, ILA, ILSL Bauru, Brzail

            Wim van Brakel, NLR Technical Advisor, The Netherlands

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Dear Dr. Schreuder,

On behalf of the National Hansen’s Disease Programs (USA) I would like to thank everyone who has written to the LML to share their condolences and memories of Judy Bell-Krotowski.  She was a wonderfully warm-hearted person who made major contributions to the field of sensory testing in leprosy, and to the lives of many thousands of people affected by this disease.  We will miss her greatly.  Your thoughts at this time are greatly appreciated. 

Sincerely,

David M. Scollard

Acting Director

National Hansen’s Disease Programs

Baton Rouge, LA, USA

 

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Dear Pieter,

With the passing of Judith it is time to acknowledge that the introduction of the nylon filaments, together with MDT, was a paramount feature of the modern approach to leprosy services. Judith Bell-Krotoski and her followers have a notable participation in this new era for leprosy.

Kind regards

Marcos Virmond

President ILA

ILSL, Bauru, São Paulo, Brazil

 

 

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Dear Pieter,

I addition to what Linda Lehman and Rob Jersky have already said, I would also like to acknowledge that I am much indebted to Judy Bell-Krotoski. It was Judy who introduced me to monofilament testing when she visited the INF Green Pastures Hospital & Rehabilitation Centre in Pokhara, Nepal. I relied on her research to a significant extent in the research I did for my own PhD. She was a lovely woman, a great scientist and a very effective motivator!

With best wishes,

Wim van Brakel

NLR Technical Advisor

Amsterdam, The Netherlands

 

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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

 

(LML) Judith Bell-Krotoski

Leprosy Mailing List – October 28,  2013 

Ref.:    (LML)  Judith Bell-Krotoski

From:  Dinkar D. Palande, Pondicherry, Tamil Nadu, India

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Dear Pieter,

 

We workers in this field, and especially all persons who had early detection and hence successful treatment of nerve impairment, owe a lot to pioneers like Judith Bell-Krotoski for the use of Nylon filaments that I consider an essential tool in the early diagnosis of nerve impairment. I have met Judith and fully endorse everything that Linda and Robert have said in their letters to LML about her.

 

Thanking you,

sincerely

Dinkar

 

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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

(LML) Judy Bell-Krotoski and the utility of Monofilaments

Leprosy Mailing List – October 26 ,  2013 

Ref.:    (LML)  Judy Bell-Krotoski and the utility of Monofilaments

From:  Robert S. Jerskey, USA

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Dear Pieter,

 

I would like to touch on the theme of  Linda Lehman’s thoughtful eulogy to Judith [“Judy” ] Bell-Krotoski posted in the LML earlier this week.

 

Despite Judy’s ongoing series of chemotherapy treatments for her cancer, she maintained a keen interest in hearing and reading of developments in the field of P.O,D. particularly along the lines of measuring nerve function impairment with Monofilaments.  For example, in a recent correspondence just weeks ago Judy wrote, and I quote:

 

“The goal for me has always been to use a sensitive, reproducible test to monitor patients for early neuropathy”

 

and

 

“Please convey my warm greetings and best wishes for success in testing to all. We know the monofilaments are good, but now need more clinical data for comparison with treatment, and identification of treatment that can really prevent impairment and disability by interrupting the developing neuropathy which in all I have measured and monitored seems highly possible if detected early.”

 

We were in touch before, during, and after the ILA Congress.  She was so pleased to hear of the resurgence of interest in the utility of the Monofilaments for helping to assess nerve function and the requests for batches of loose filaments from different continents----thanks in great part to the LML. 

 

I can very confidently say that Judy would be simply thrilled to read of Dr. Narasimha Rao’s news update re: the dissemination of the Monofilaments and instruction in their use at the seminars for large numbers of dermatologists----this appears to be “a first” globally in terms of such numbers and of the significance of target audience--dermatologists.

 

If not for Judy’s dedication and generosity, the Monofilaments would not have been available for distribution at the Congress.   (And there is still an ample supply for some time to come for those who were not able to receive them at the Congress---those interested can contact me.)  

 

One of our last conversations included the question of a grant proposal for a sustainable supply of the Monofilaments to major centres and clinics worldwide.

 

In Memoriam and Gratitude to Judy.

 

Thanking you Pieter and the others who manage this LML---it continues to be such  a singular tool and resource for so many.

 

Kind regards,

Robert

 

Robert S. Jerskey, LOTR, P.O.D.consultant

robjerskey@yahoo.com

 

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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

 

(LML) 6th National Colloquium on Evidence Based Integrative Medicine on Lymphatic Filariasis and other Chronic Dermatoses

Leprosy Mailing List – October 23,  2013 

Ref.:    (LML) 6^th National Colloquium on Evidence Based Integrative Medicine on Lymphatic Filariasis and other Chronic Dermatoses

From:  SR Narahari, Kerala, India

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Dear Dr. Pieter,

 

 

I am attaching the invitation  inviting experts and patients to participate in a priority setting workshop organized in Kasaragod, Kerala in Southern India. I request you to forward this to the group as several members have shown interest in Lymphatic Filariasis in the past.

 

 

Thank you,

 

S R NARAHARI Institute of Applied Dermatology Kasaragod, Kerala, India   srnarahari@sify.com

 

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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

(LML) SW filaments

Leprosy Mailing List – October 23,  2013 

Ref.:    (LML) SW filaments

From:  P. Narasimha Rao, New Delhi, India

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Dear Dr Pieter Schreuder,

I like to refer to the LML August 25, 2013 from Mr Robert Jerskey and other mails related to SW filaments  and my enquiry about SW filaments.

I am extremely grateful to the members of LML and especially to Mr Robert Jerskey, for their responses to my enquiry regarding SW filaments through this forum. Mr Robert, as he promised,  handed over a good number of SW filaments to Dr KU Kiran at Brussels during congress.  I thank him for his generous gesture of giving them away free of charge. We promise to put them to good use. 

In this connection, I would like to inform you about the activities taken up by Indian association of Dermatologists, Venereologists and Leprologists (IADVL- the principal association of Dermatologists of India with membership of over 7000), and its Special interest group (SIG) on leprosy in the field of leprosy. 

IADVL - Special interest group (SIG) on leprosy, with the support of NGO ‘Codewel Nireekshana–Acet’, Department of Dermatology, Gandhi Medical College had organized a one and half day CME and Workshop, titled 'Update on Leprosy–for PGs to Practitioners' on 14^th and 15^th September, 2013 in the campus of Gandhi medical college, Hyderabad, India.   More than 200 residents and faculty of Dermatology attended it.  The emphasis of CME was to inform and update delegates of the present status and newer developments in leprosy. The Workshop was planned in such a way to demonstrate essential clinical and basic laboratory techniques to all delegates apart from showing few advances in management options of leprosy.  During the workshop where the use of SW filaments was demonstrated, may delegates were happy to receive filaments to use in their clinics and hospitals. The enthusiasm and participation of the delegates during the CME and Workshop was very heartening. 

IADVL and SIG leprosy is planning similar CME and workshops in other part of India to sensitize young Dermatologists and residents of Dermatology to the issues of leprosy. 

With best regards,

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

 

Hon. General Secretary and Member SIG leprosy

IADVL,  India.
 
Phone- 040-23514566
Mobile-09849044898

 

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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

(LML) CAPT. Judith A. Bell Krotoski, OTR, CHT, FAOTA

Leprosy Mailing List – October 21,  2013 

Ref.:    (LML)  CAPT. Judith A. Bell Krotoski, OTR, CHT, FAOTA

From:  Linda Lehman, Belo Horizonte, Brazil

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Dear Pieter,

 

 

Just heard that Judy Bell-Krotoski died after a recent diagnosis with a very aggressive cancer.  Judy had worked with me, and ALM, many years ago in training people at GWLHDC and with us in Brazil and research.  She was the one who motivated us to create the SORRI Bauru Sensory testing kits and also was the one who encouraged and started people using monofilaments for earlier diagnosis of nerve function problems.

 

She was an original pioneer of hand therapy, amazingly creative not known by many, a visionary, a champion of causes especially in her capacity as officer in the United States Public Health Service and her work with sensibility testing of hands and upper extremity of patients with Hansen's disease (Leprosy).

 

May she rest in peace and be remembered for the good mentoring and education she provided to many of us! Please keep Al, her husband and Judy's son in your prayers.  

 

Thank you,

 

 

Linda

Linda F. Lehman, OTR/L MPH C.Ped

Technical Director, Programs

 

American Leprosy Missions

One ALM Way, Greenville, South Carolina 29601 USA

R. Castelo de Alenquer 390 Apt 302  Belo Horizonte, MG 31330-050 BRASIL

BRASIL Direct:  +55 31.3476.6842  +55 31.9637.5576

 

llehman@leprosy.org | www.leprosy.org

 

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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

(LML) MB patients without clear treatment status and chronic ENL

Leprosy Mailing List – October 21,  2013 

Ref.:    (LML) MB patients without clear treatment status and chronic ENL

From:  Jaison Barreto, Bauru, São Paulo, Brazil

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Dear Pieter,

 

About this cases of "eternal ENL", the view of Dr. Walker and Dr. van Brakel are well stated.

 

I have seen several cases of recurrent ENL in the field and inside our Institute. There are 3 conditions that must be observed by the physician: 

1.     In some instances, as posted by Steve, the affected patient still presents active lesions, usually lepromas, and when we take a smear FROM THE LEPROMAS (not only from index points), there are still viable (not fragmented) bacilli. In this cases, however, not always we see growth of M. leprae in mouse foot pads. I think the cause of this paradox is because the tissue of old leproma still has a huge amount of clofazimine, which is bacteriostatic.

2.    Some patients have infections or parasitosis, or sometimes not controlled diabetes. All we know that not specific inflammations or stress can stimulate immune system, and be the trigger of a immunological hypersensitivity.

3.    I have seen that as many as 50% of patients who suffer from recurrent ENL still have contact with MB not diagnosed, when I call the household contacts and evaluate them. As many as 80% were not, indeed, evaluated, i.e., had previous dermatological and neurological examination. Most do not live at the same house, and often do not present clearly visible patches. Many (mainly grandfather/grandmother) have previous misdiagnosis of sinusitis, rheumatism, circulatory diseases, connective tissue disease, and other conditions.

 

So, once LL leprosy is very difficult to diagnose, and grandfather/grandmother/brothers are not commonly called to be evaluated when they do not live with the patient, I always call all the family when I find "uncontrollable reactions". I have seen that several "uncontrolled" Type 1 or Type 2 reactions become controllable after the beginning of treatment of ALL affected persons of the family. Leprosy MUST BE SEEN AS A DISEASE INSIDE THE FAMILY.

 

Finally, and interestingly, we all know that when an individual is exposed to antigens which he was previously sensibilized, the natural response is hypersensitivity: PPD reaction is high in active tuberculosis, Montenegro reaction is high in cutaneous leishmaniasis, rheumatic fever can occur just after the single contact between mucosa and Streptococcus, etc. Why this situation could not possible for leprosy? If we agree that antibody production to PGL-1 can occur just because there was a single contact between M. leprae and nasal mucosa, though this does not mean disease, why a hypersensitivity reaction cannot?

 

Best regards,

 

Jaison  

     

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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

(LML) MB patients without clear treatment status and chronic EN

Leprosy Mailing List – October 21,  2013 

Ref.:    (LML) MB patients without clear treatment status and chronic ENL

From:  Maneesha Godbole, Andhra Pradesh, India

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Dear Dr. Schreuder,

 

I would like to refer to the letter of Prof. José Augusto da Costa Nery of 17 October 2013.

 

If it is possible to obtain information about their treatment status from the state that they have migrated in from, it would be excellent. This is possible if the records are maintained and there exists a good communication system. I have no idea how it would be in your country. In India, it would be possible if the patient migrates in from within the same state, but difficult if from another state. If the patient gives the history of having completed treatment recently, then of course it would take time for the BI to come down.

 

However, if the history is very unreliable, it would be safer to restart and complete a full course of MDT, not only for the patient's benefit, but also in the  interest of the community, to prevent transmission.

 

The Type II reaction can be managed with Thalidomide and steroids as required. Starting the patient on high dose of clofazimine would reduce the frequency and severity of the episodes. It can be given in the dose of 100 mg 3 times a day for 3 months, then 100 mg 2 times a day for 3 months, followed by 100 mg once a day for 3 months and then reduce to 50 mg daily.

 

With best wishes,

Dr.Maneesha Godbole
India

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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

(LML) MB patients without clear treatment status and chronic ENL

Leprosy Mailing List – October 20 ,  2013 

Ref.:     (LML) MB patients without clear treatment status and chronic ENL

From:   Wim van Brakel, Amsterdam, the Netherlands

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Dear Pieter,

 

Thanks for the interesting question raised by Dr. José Augusto in LML of October 20, 2013.

 

The difficulty seems to be the reliability of the history of treatment. I'm inclined to trust (former) patients regarding what they tell me. It may take time though to win their trust and to explain that you need this information to decide on the best course of treatment for them. If there is doubt, I would give another course of MB MDT. This is particularly useful if patients will remain under your or someone else's medical supervision during that time. 

 

In my view it is not useful to restart MDT in the case of post-MDT ENL reactions, if a full course of MDT has been completed. The reason that the incidence of ENL reactions increases after release from MDT is the loss of the anti-inflammatory effect of clofazimine. A reaction is not a sign of bacterial activity, as I'm sure you know, at least not in the first few years after MDT. 

 

Clofazimine has a definite role in post-MDT ENL reaction management, particularly in patients with repeated episodes of reaction. Thalidomide is very effective, but not necessary unless reactions are very severe or insufficiently treated with clofazimine and corticosteroids. 

 

With kind regards, 

 

Wim van Brakel, MD MSc PhD

Technical Advisor NLR 

 

w.v.brakel@kit.nl

 

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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

(LML) MB patients without clear treatment status and chronic ENL

Leprosy Mailing List – October 20,  2013 

Ref.:    (LML) MB patients without clear treatment status and chronic ENL

From:  Stephen Walker, London, UK

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Dear Pieter

 

 

I would like to refer to the letter of José Augusto of October 17, 2013 and thanking him for sharing this scenario with us.

 

Such decisions need to be made on an individual basis for each patient given the information available and its reliability. It is also important to ensure that they are adherent to their ENL treatment and have no underlying intercurrent medical problems driving the reaction.

 

I think there are good reasons for instituting MB MDT in these patients:

1. It ensures that one can be confident they have been adequately treated with respect to infection.

2. There may be some anti-ENL benefit from clofazimine

3. MB MDT was previously given for longer than 12 months to all patients and the Global Strategy allows for the extension of MB treatment in highly smear positive individuals beyond 12 months. Therefore recognising that in these individuals there are benefits to extending treatment. In Section 5.2 Enhanced Global Strategy 2011-15: "Rarely, it may be considered advisable to treat a patient with a high Bacterial Index (BI) for more than 12 months. This decision may only be taken by specialists at referral units after careful consideration of the clinical and bacteriological evidence."

 

Having said all that I am not aware of any evidence to suggest that this approach will shorten the duration or reduce severity of the ENL in the situation you describe.

 

The LML is a good forum to get other views and via the ENLIST LinkedIn board/email list.

 

 

Best wishes,

 

Steve

   

Dr Stephen Walker PhD MRCP(UK) DTM&H
Consultant Dermatologist and Clinical Research Fellow
Department of Clinical Research 
Faculty of Infectious and Tropical Diseases
London School of Hygiene and Tropical Medicine
Keppel St
London
WC1E 7HT
44 20 7612 7863
44 7847 187831

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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

 

(LML) MB patients without clear treatment status and chronic ENL

Leprosy Mailing List – October 17,  2013 

Ref.:    (LML) MB patients without clear treatment status and chronic ENL

From:  José Augusto, Rio de Janeiro, Brazil

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Dear Pieter,

We received some MB patients from other states without reliable information about their treatment history and if they received  the full course of MDT. Most of these patients have still a high BI. These patients have maintained reactional episodes of ENL which are difficult to control.

Do you think these patients should be restated MDT to ensure a full course of MDT while we are trying to reduce these episodes of type II reaction? As reaction treatment usually  thalidomide is given together with or without prednisone and pentoxifylline.

What is the advice of LML readers regarding this same situation (to restart a full course of MDT or not) in other countries?

 

Best regards,

 

Dr. José Augusto da Costa Nery

Ambulatório Souza Araújo

Laboratório de Hanseníase

Instituto Oswaldo Cruz - Fiocruz

Av. Brasil 4365, Manguinhos, Rio de Janeiro - RJ CEP 21040-360

Tel. (21)2562-1588

neryjac@ioc.fiocruz.br

 

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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

 

(LML) The place of leprosy in present day national health systems

Leprosy Mailing List – October 16,  2013 

Ref.:    (LML) The place of leprosy in present day national health systems

From:  Joseph Kawuma, Kampala, Uganda

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Dear Pieter,

 

Thank you for inviting me. By attached file you will find my Power-Point presentation “LEPROSY IN A CHANGE CONTEXT. The place of leprosy in present day national health systems” as given at the International Leprosy Congress, Brussels, September 2013. Of course the PP cannot contain all that I said and what was discussed during the presentation.

 

Best regards,

 

Herman-Joseph Kawuma

GLRA, Uganda

 

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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

(LML) Report on ILC pre-congress workshop 'Community-bases approaches to patient detection and improving leprosy services` 16.09.2013

Leprosy Mailing List – October 10,  2013 

Ref.:    (LML)  Report on ILC pre-congress workshop 'Community-bases approaches to patient detection and improving leprosy services` 16.09.2013

From:  Ernst Hisch, Wuerzburg, Germany

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Dear Dr. Schreuder,

 

Please fin attached the report on the workshop above for LML distribution.

The workshop was –despite of short notice- well attended and well received by the audience. We are working on a follow up.

 

Best wishes,

 

Ernst Hisch

Teamleader Program Development and Research

Deutsche Lepra- und Tuberkulosehilfe e.V.

German Leprosy and TB Relief Association

Marianhill Strasse 1c

97074 Wuerzburg

Germany

Email: ernst hisch@dahw.de

Tel. 0049-(0)931-7948-120

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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