Leprosy Mailing List Blog

Thursday, January 23, 2020

FW: (LML) Free Access to leprosy articles for World Leprosy day

Leprosy Mailing List – January 23, 2020

Ref.: (LML) Free Access to leprosy articles for World Leprosy day

From: Diana Lockwood, London, UK

Dear Pieter,

The Royal Society of Tropical Medicine is marking World Leprosy day with 3 weeks of free access to recently published articles on leprosy in the journals Transactions of Hygiene & Tropical Medicine and International Health.

I have just published a review article highlighting the chronic aspects of leprosy which I think need to be considered more. This includes management of reactions and recognition of neuropathic pain. It would also be good to estimate the numbers of people living globally with leprosy related health problems.

The link is below and is active until Feb 14^th.

https://academic.oup.com/trstmh/pages/world_leprosy_day

I would like to thank the RSTMH for taking this interesting initiative.

Chronic aspects of leprosy—neglected but important Diana N J Lockwood

Transactions of The Royal Society of Tropical Medicine and Hygiene, Volume 113, Issue 12, December 2019, Pages 813 817, https://doi.org/10.1093/trstmh/try131

The chronic aspects of leprosy are discussed here. They are a consequence of the peripheral nerve damage that affects many patients during their lifetime with leprosy. The peripheral nerve damage leaves people unable to feel and with weakness in their hands and feet. They are at risk of damaging their hands and feet, causing the disabilities and deformities that characterise late leprosy.

More than 200 000 new leprosy patients are diagnosed globally each year. Better data are needed from cohort studies to estimate the number of patients developing nerve damage and modelling studies are needed to estimate the number of patients who develop disabilities. For some of them, this will be a lifelong disability.

Nerve damage is caused by inflammation in leprosy-affected nerves. Patients with nerve damage of <6-mo duration need treatment with steroids. About 66% of multibacillary patients will develop nerve damage. Plastic graded monofilaments can be used to detect nerve damage in leprosy and diabetic clinics. Assessing nerve damage and treating patients with steroids in leprosy programmes needs to be strengthened. The World Health Organization has a successful programme for supplying antibiotics for treating leprosy infection to national leprosy programmes. They should take responsibility for providing steroids to national programmes since this is a core part of the treatment for >66% of multibacillary patients. Patients need to be asked about neuropathic pain symptoms and treated if necessary.

Treated leprosy patients are at risk of developing ulcers in their feet. Treatment and prevention need to be improved through health education, providing protective footwear and patient empowerment.

Diana Lockwood

Retired Professor of Tropical Medicine

London School of Hygiene & Tropical Medicine

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) Co-morbidity between Albinism and Leprosy

Leprosy Mailing List – January 23, 2020

Ref.: (LML) Co-morbidity between Albinism and Leprosy

From: Ben Naafs and Blasdus Njako, the Netherlands and Tanzania

Dear colleagues,

Dr. Njako from Tanzania asked Dr. Ben Naafs if he knows of a co-morbidity between albinism and leprosy. In the annexes you find several references found by Ben. The question is to the LML readers if they have seen such co-morbidity and would like to report of this to LML.

Regards,

Pieter AM Schreuder

"Subject: Co-morbidity of albinism and leprosy

Dear Prof. Ben Naafs,

Many greetings from Tanzania. I wish you a very happy and prosperous new year 2020. It was a great pleasure to meet you in Manila, Philippines during the International Leprosy Congress.

Today being your student from KCMC, Moshi; I have a question:

DO YOU KNOW WHETHER CO-MORBIDITY OF ALBINISM AND LEPROSY OCCURS? ARE THERE ANY PAPERS WRITTEN ON THAT?

Many thanks in advance for helping to clarify on this.

With my best regards.

Dr. B.F. Njako

Subject: Co-morbidity of albinism and leprosy

Dear dr Njako,

I have not seen it myself, but I found several articles about it.

I will ask dr Schreuder to ask the LML readers whether they have seen this co-morbidity.

Regards,

Ben"

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

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

Contact: Dr Pieter Schreuder << editorlml@gmail.com

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Wednesday, January 22, 2020

FW: (LML) Leprosy Eponym: need for a medical name

Leprosy Mailing List – January 22, 2020

Ref.: (LML) Leprosy Eponym: need for a medical name

From: Ajit P, Maharashtra, India

Dear Pieter,

In recent past, there have been a couple of communications regarding renaming leprosy or Hansen's disease.

The suggested alternative mycobacterial neurodermatosis, has the genuine chance of being confused with neurodermatitis. Neurodermatitis, as all dermatologists will know is a group of common skin conditions produced by habitual scratching and rubbing, the prototype being lichen simplex chronicus. Indeed, a Google search of the term neurodermatosis, returns results of neurodermatitis. Webster dictionary even defines neurodermatosis as dermatosis caused by or related to psycho-somatic or neurogenic factors.

https://www.merriam-webster.com/medical/neurodermatosis

Regarding the objections raised against Hansen's disease, I would ask, who amongst us is without sin? Do we disregard the contribution of Dr Gerhard Hansen totally? It is true somewhere we draw a line, and hence we avoid Reiter's disease and say reactive arthritis, one of the reasons for which being, Hans Reiter was a Nazi war criminal.

And regarding leprosy, the issue is stigma. If we dermatologists ourselves say that the term leprosy should be avoided because of stigma, then in a way we are giving indirect approval to the concept that having leprosy is indeed a stigmatising thing.

Dr Ajit

Consultant dermatologist

India

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) Leprosy Eponym: need for a medical name

Leprosy Mailing List – January 22, 2020

Ref.: (LML) Leprosy Eponym: need for a medical name

From: Francesca Gajete, Manila, the Philippines

Dear Pieter,

We fully agree with both Dr Diana Lockwood and Dr Ruth Butlin to give Leprosy a new name, it is about time for Leprosy Interests Groups to look into this concern.

Mycobacterial Neurodermatosis or simply Neurodermatosis aptly describes what leprosy is, more so, it emphasizes the need for neurological examination.

We are equally grateful for bringing this up.

Sincerely,

Francesca Cando Gajete,MD,MHA,FPLS

Retired National Leprosy Control Program Manager,Philippines

Vice President for ASIA,(Philippines) International Leprosy Association

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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Tuesday, January 21, 2020

FW: (LML) Leprosy Eponym: need for a medical name

Leprosy Mailing List – January 21, 2020

Ref.: (LML) Leprosy Eponym: need for a medical name

From: Diana Lockwood, London, UK

Dear Pieter,

I would like to add a belated thank you to Ruth Butlin for her detailed post on Nov 2019 (LML, 15-11-2019) showing why Hansen's name should not be associated with the disease.

A new medical name would be very helpful. Then patients who are unaware of the historical stigma associated with leprosy will not be burdened with this. A medical name can emphasis the infectious nature of the condition. Many patients now hear the words that leprosy is curable but they remain unaware that it is caused by an infection. Calling it neurodermatosis would be helpful in highlighting the need for neurological examination.

Her proposed mycobacterial neuro-dermatosis is a good suggestion

I think the medical need for an accurate name should be discussed at patients' fora and medical meeting organised in the leprosy world such as the ILEP meetings which comprise both doctors and people affected representatives.

Diana Lockwood

Retired Professor of Tropical Medicine

London School of Hygiene & Tropical Medicine

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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Sunday, January 19, 2020

FW: (LML) Dapsone allergy and MB treatment

Leprosy Mailing List – January 19, 2020

Ref.: (LML) Dapsone allergy and MB treatment

From: Arry Pongtiku, Papua, Indonesia

Dear Pieter,

I could not avoid myself not to comment about Dapsone allergy posting by Dr. Shen Jianping and replying by Dr.B Naafs. I have already few times posted issues about the Dapsone allergy (DHS). Last year I shared in this leprosy mailing list a short paper about " Epidemiological Dapsone hypersensitivity syndromes among leprosy patients in Indonesia and its black box".

Dapsone Hypersensitive Syndrome /DHS is a sorrow behind MDT successful stories.

Papua and Papua Barat, eastern provinces of Indonesia have high incidences of Dapsone allergy. Some spots of high incidences of DHS (more than 1%) and remote areas we have a local policy to remove Dapsone from blister for MB treatment since 2007 (but already practiced some years before that).

As we are aware of Dapsone allergy it is an important topic when we gave leprosy training. Dapsone allergy often occurred after completion of the first blister of MDT with mild symptoms: dry skin, itchy, feels hot burning, arise rashes, headache, watery eyes. Severe symptoms: dry cough, shortness of breath, flaky skin (dermatitis exfoliativa), sore on the lips, mouth, jaundice. Dapsone allergy is not infrequently fatal where people/medical staff less aware. In the cases of Dapsone allergy, MDT must be stopped and give immediate prednisolone treatment. Administration of prednisolone should be slowly tapering off, practically completed about 1.5 months.

My experience also those who are already allergic but we forgot when to take dapsone or sulfone derivate for the second time the onset will be shorter and dangerous.

More than 10 years of observation, I felt 2 drugs (Rifampicin and clofazimine) were enough for MB treatment for those with allergy. However, in the last 5 years, I also found some cases of those who complete treatment clinically relapsed. I also think maybe caused by insufficient drugs or reinfection.

I remember one spot of leprosy in very remote areas in 2013 (60% of tribal population in remote areas got leprosy) they would remove dapsone for treatment, I insisted to give full of treatment of MDT because of hyperendemic leprosy. Those who have no symptoms we give blanket chemoprophylaxis with single rifampicin. It was successful and no case was diagnosed anymore.

Minocycline and ofloxacin are not available in the program in Indonesia and difficult to find.

Together with Nalagenetic Singapore and National Research Indonesian Institute in 2016-2017, I involved in taking samples of those who suffered from Dapsone allergy in Papua and Papua Barat, they were all confirmed positive for the biomolecular test.

Thank you very much,

Best Wishes,

Arry Pongtiku (Papua, Indonesia)

Former National Leprosy Adviser/ Netherlands Leprosy Relief: 2006-2016

Until now practicing for leprosy

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, January 18, 2020

FW: (LML) Dapsone allergy and MB treatment

Leprosy Mailing List – January 18, 2020

Ref.: (LML) Dapsone allergy and MB treatment

From: Ben Naafs, Munnekeburen, the Netherlands

Dear Pieter,

Thanks to Dr. Shen Jianping for his very relevant question regarding Dapsone allergy and multidrug MB treatment (LML, January 6, 2020). I think it is good that all Chinese leprosy patients are checked for the 1301 gene-locus. Dapsone Syndrome is a terrible occurrence. But as pointed out having this gene locus does not always lead to the Dapsone syndrome.

Treating Multibacillary patients with only 2 drugs was at start of the MDT considered insufficient with no clinical evidence. But we know now that highly positive patients in a high endemic area after many years may relapse. Even in non-endemic area's as the Netherlands, we have seen relapses we considered from persisters. We still do not know how we can eradicate those persisters. Except maybe with a preventive treatment. Then still resistance may have occurred.

The paper from Yunnan fits in with my own feeling. PB as WHO advised will be treated with 3 drugs with the mentioned locus they will get 2 drugs. Which most likely will be enough. But my feeling is Rifampicine with Clofazimine together is not enough for MB patients. Without proper evidence, the WHO has neither, I would add minocycline or another 3^rd drug. And then still we may have relapses.

My excuses for this personal answer, I think we have no sufficient evidence from trials and worse no good follow up.

We wish you a good Chinese New Year

Dr Ben Naafs

Dermatovenerologist

Leprologist since 1973. Ethiopia, Zimbabwe, The Netherlands, Brazil. Tanzania

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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