(LML) Smoking and leprosy

Leprosy Mailing List – August 2,  2015

Ref.:    (LML)  Smoking and leprosy

From:  PK Das, Birmingham, UK

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Dear Pieter,

I have noticed an email from Cairns Smith (LML, 31-07-2015), attributing the role of "nicotine" to "immune suppression as the cause of poor wound healing and "a neuro degenerative effect". In the context of the latter Cairns goes as far as concluding that ”the damaging neuronal development both in adults and children that have an effect in leprosy".

With due respect to Cairns, my suggestion is that such "blanketed" concluding remarks should be taken with a pinch of salt. i.e. caution ( although I am aware that Cairns is regarded as living "God Father" in leprosy). As a tiny and frustrated ageing bio-scientist (in the field of leprosy immunopathology, as a limited fashion), I would like to point out that the mechanistic of the effect of Nicotine either in the context of immune suppression and wound healing is not that simplistic as Cairns appear to depict.

Principal studies on the effect of Nicotine were carried out in Cancer metastasis, bone fracture, in in vitro cultured fibroblasts (gingiva) as  wound healing model (not a true model) and in cell migration /recruitment. Since it is now well recognised that for effective wound healing a robust recruitment of inflammatory cells  (led by macrophage subsets) at the site of wound is a pre-requisite. Indeed Nicotine inhibits such recruitment and thus delays the wound healing. It is therefore expected that heavy smokers among leprosy patients may face to an extra complexity in suffering in the form of ulceration due to delayed wound healing.

Rationally, I would not expect any association between smoking and susceptibility per se to leprosy.

One more point, I would like to state that in my old age I take a special interest on "Nicotinic acetylcholine receptor"(my ancient research on these receptors at least for bed time reading), because one of my close and late Italian friend (successful singer) who was a heavy smoker had to have his both legs amputated, because his traumatised leg bones slowly degenerated due to lack of healing by localised Nicotine deposit. The moral of the story is that leprosy literature is full of personalised enigmatic theories, although they originated sincerely from respective experiences , and one should be aware of it.

Regards to these experts,

Pran

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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

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(LML) Smoking and leprosy

Leprosy Mailing List – August 1,  2015

Ref.:    (LML)  Smoking and leprosy

From:  Joydeepa Darlong, West Bengal, India

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Dear Pieter,

This is an interesting observation (Cains Smith, LML 31-07-20150. Almost all our patients use nicotine in the form of smoking bidi( rolled up tobacco leaves used in rural India) or chew powdered tobacco. Even women are also addicted.

Peripheral arterial disease has been detected in many in the form of absent dorsalis pedis pulse and sometimes by Doppler study.

We do routinely ask them to stop tobacco more so if they have peripheral neuropathy.

Is there any way to confirm this nerve damage?

We must follow it up.

Regards

 Joydeepa Darlong

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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

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(LML) Socio-economic rehabilitation: habitat for people affected by leprosy

Leprosy Mailing List – July 31,  2015

Ref.:    (LML) Socio-economic rehabilitation: habitat for people affected by leprosy

From:  Muherman Harun, Jakarta, Indonesia

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Dear Pieter,

I have seriously noticed the sphere of critics, sceptics, negative statements, pessimistic predictions, insinuation and even opposition (NB. from my own country!) towards our project (Superb Habitat for People with Leprosy). For all those friends, I would mention the HABITAT for HUMANITY (HfH) that since almost 40 years ago, has built 600 000 houses in 75 countries. The HfH is an universal project, widely accepted and highly appreciated. The Indonesian branch has in its 5 year campaign planned to build 60 000 houses (called ‘homes’). Never is heard a word against this Habitat!

We also want to  set up a Habitat for people affected by Leprosy. Our aim is not to eliminate, or control Leprosy. For how many ages, if not millennia, have those people been deprived of happiness m life? They were despised, ostracized, discriminated against for so long, we now want to give them all the best we can offer, share with them the full happiness of life, enjoying the excitements of life. Is there anything wrong with that idea? 

Only a hundred families with Leprosy will we accommodate in our Habitat, which is called SUPERB, because we eagerly, want to offer comprehensive holistic services through total empowerment of the people who are suffering direct or indirect from the disease. In our program, empowerment is used instead of rehabilitation. It is our opinion, that empowerment implies transferring power to the people affected by Leprosy to change their life and destiny.

The Bangkok Declaration 2013 point 2f, mentions  ‘ empowerment of persons affected by leprosy”.   What we want is to empower a community of people with leprosy. Our ultimate aim is, not the incapacitated person who has to carry out the heavy job on the field, but other family members who are healthy and fit and gladly willing to participate in our community empowerment project under guidance of our professional trainers.

The ticket to enter our project is the presence of one person (or more) with leprosy. It has been understood and agreed upon,  that the Habitat will not allow people to stay, who are unwilling to work, or show anti-social behaviour (trouble makers, instigators, etc.). They have agreed beforehand, that in such case they will be returned back to their previous living location.

The comprehensive set of our holistic care  comprises  five  elements of service:

1. Physical empowerment, includes providing care and preventing leprosy, by early detection, proper treatment until complete cure, monitoring and nursing  the more serious stages of disease, specialist’s consultation if needed. Supervising treatment for the most common cardiovascular, respiratory, and metabolic diseases.

2. Social empowerment towards self-sustainability . People will be provided ½ or ¼ Ha piece of land to grow vegetables of their liking. We will supply their daily needs, to lead a normal ‘social’ life, to be achieved within 2 years.

3. Economic empowerment towards productivity. People will be provided 1 ½ Ha piece of land for agriculture, farming, livestock, etc. depending on location, eventually supplying adjacent markets with superior products in ample quantities. This will be achieved within 5 years with the help and guidance  of cooperatives and marketing experts, enabling them to earn money, increasing their family income enough  to ‘firmly stand on their own feet’,  with dignity (without discrimination).

4. Mental empowerment to defy  ‘self-stigmatization’,  developing a strong positive outlook about the person with leprosy, the family, the Habitat and life itself, gaining self-confidence and self-respect. Simple music making and singing together is conducive for developing the sense of belonging.

5. Spiritual empowerment implies the elimination of age-old mythos, curses of divinity, towards reconciliation and restoring devotion to the Almighty.

A final request: This is a unique and grand project, for your, and everybody’s support.

Thank you,

Muherman Harun

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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

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(LML) Smoking and leprosy

 

Leprosy Mailing List – July 31,  2015

Ref.:    (LML)  Smoking and leprosy

From:  Cairns Smith, Aberdeen, UK

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Dear Pieter,

 

 

Someone asked my last week if there were any known associations between smoking and leprosy.  The theory was that because smoking and specifically nicotine has an immunosuppressive effect with one consequence being poor wound healing and a neurodegenerative effect damaging neuronal development both in adults and children that it may have an effect in leprosy.

I have no idea if there is any evidence of an association and I wondered if any of the LML readers has any information on the topic?

Cairns  

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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

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(LML) Socio-economic rehabilitation: habitat for people affected by leprosy

Leprosy Mailing List – July 31,  2015

Ref.:    (LML) Socio-economic rehabilitation: habitat for people affected by leprosy

From:  Joel Almeida, India

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Dear Pieter,

 

It is good to hear from Dr Gopal(LML, July 29, 2015), given his life experiences, and from the many other eminent personalities who have commented on Dr Harun’s proposal.

 

Dr Harun’s commitment and drive are admirable.

 

The question appears to be, what to do with the land being provided? Nobody is suggesting that this land, offered free of charge, should be refused. Nor is anyone suggesting that it is available for sale.  In short, the land can be used to help disadvantaged people or it will again become unavailable.

 

Dr Harun is not trying to persuade anyone that his effort should be taken as the gold standard of rehabilitation for leprosy-affected people.  He has merely obtained the offer of some land.  That is a great achievement.  He is asking for relevant experiences, so that he can make best use of the land.  Dr Gopal and others have offered some useful and constructive tips. More will surely follow.

 

Leprosy-affected persons are no different from people ostracised owing to other characteristics.  They should enjoy all the benefits which may become available to all people unjustly ostracised by society.

 

If an ostracised person were to be given 2 hectares of land in an unspecified place, few would object. Likewise, if a leprosy-affected person were to be given 2 ha in such an unspecified place, few would object. That is because the surrounding land would presumably be owned by non-ostracised people.

 

There is no suggestion that the owner of this 2 ha will be prevented from travelling as much as they like.  There is no suggestion that residents on this land who never had leprosy will be segregated from those who ever had leprosy.  There is no restriction on freedom of movement for any of the residents, whether or not they ever had leprosy.

 

Why, then, is there any concern in this case about giving an ostracised person 2 ha of land? Apparently because the neighbours might be leprosy-affected persons. In short, we are raising concerns about helping a person ostracised on grounds of leprosy on one ground alone.  That is, because the neighbours might be leprosy-affected persons.  This is a questionable basis for discrimination against anyone.

 

The question for an individual affected by leprosy is: Will I (and my loved ones) be better off with or without this 2 ha? 

 

How do we support the best interests of the intended beneficiaries?

 

That is not the same as asking; what is the best way of overcoming stigma against leprosy?  Reduction of stigma is a longer-term effort, with benefits to society. Efforts to lift stigma can continue without depriving an ostracised person and their family of 2 ha of land in the immediate future. 

 

It is also open to us to raise money to buy each individual 2 ha of land elsewhere.  Or immediately to invest in alternative rehab so attractive and effective that those offered these 2 ha will boldly refuse.  But let’s think many, many times before depriving ostracised people of this 2 ha which could transform the lives of their families.

 

Within a couple of decades, this land will be populated almost entirely by people who never had leprosy.  If all goes as intended by Dr. Harun, it will be an exemplary self-supporting (if not prosperous) habitat. By that time, the residents will hopefully boast that some of their predecessors had leprosy.

 

I have no stake in the matter, and no special knowledge or experience.  But that’s how it looks to me as an interested bystander.  I hope to continue my education.

 

Regards,

 

Joel Almeida 

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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

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(LML) Socio-economic rehabilitation: habitat for people affected by leprosy

Leprosy Mailing List – July 30,  2015

Ref.:    (LML) Socio-economic rehabilitation: habitat for people affected by leprosy   From: Grace Warren, Sidhey, Australia

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Dear Pieter,

 

I would like to support Dr Noto’s letter (LML, July 28, 2015) pointing out that it is much better to resettle treated leprosy patients into the general community, than to set up a "settlement” labelled leprosy.  In many Asian countries  and that includes Indonesia, the mention of Leprosy is a problem and   for proper re-settlement of leprosy patients   it is advisable to ensure that they have no definite label of leprosy and do not show definite stigmatic signs of the disease.

 

For 50 years, I worked in Asia in many countries helping leprosy patients. Ideally find them before there is definite stigma and then it should be relatively easy to resettle them into the regular community, not even into a village for the disabled as they could   be suspected.  For thousands (literally) of patients across Asia and Africa I have been able to aid rehabilitation, and teach the local medical staff to use the facilities at their disposal to help their patients, by the correction of the physical deformities caused by leprosy, e.g. correcting clawed hands so the patient can work without attracting attention or correcting a foot drop and healing foot ulcers so patients can work in the fields and mix in the general community.  In our hospitals we also have programs training the patients in the essentials of regular work and teaching arts&crafts that the patients can do at home and sell on the  market  if they are physically unable to do the regular manual field work etc.  If it is preferable that the community contains people with deformity from motor accidents and work accidents that makes it more generally accepted. 

 

The Leprosy Mission International with whom I mainly worked has been able to establish or build up many of these settlements also giving places to live for those without leprosy and being prepared to operate on others with deformity not caused by leprosy, in their hospitals. I have lost count of the number of children with talipes that I have operated upon or of those with severe scars or deformities due to accidents. This all helps to   reduce the stigma of leprosy and make those suspicious of having the disease more prepared to come and be checked, examined and treated. It all works together to help encourage those who may be affected to come and be checked and this must help reduce the world wide load of the disease. In many of our centres the local people virtually accept our hospital as the local hospital.

 

Yes, it is good to hear of the plans for Indonesia but Please do not label it leprosy, or advertise it is for leprosy- having  some  obviously non leprosy residents will help general acceptance!!!

 

 May you really be able to provide help and care for many in need.

 

Grace Warren

Previously Adviser in Leprosy and reconstructive surgery for The Leprosy Mission in Asia (1975-90)

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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

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(LML) Socio-economic rehabilitation: habitat for people affected by leprosy

Leprosy Mailing List – July 30,  2015

Ref.:    (LML) Socio-economic rehabilitation: habitat for people affected by leprosy

From:  Matthias Wittrock, Bregenz, Austria

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Dear Dr. Schreuder

First, let me express my sincere appreciation for the good intention, and for the good work of Dr Harun.

As no full-fledged project proposal was sent, it is hard to comment on the planned intervention. Still, I do feel skeptical about it. I see charity, but I do not see clear intervention logic/a theory of change. This is not only due to the anti-leprosy component, but to the general approach of the project.

I appreciate Dr. Kawuma’s comments on the leprosy work. In addition to Dr. Kawuma’s remarks, and to the ILEP documents http://www.ilep.org.uk/technical-advice/ , I suggest to check for classic project evaluation documents http://www.oecd.org/dac/evaluation/daccriteriaforevaluatingdevelopmentassistance.htm: Is the approach (1) effective, (2) efficient, (3) sustainable, (4) impact oriented (5)… ? Actually I doubt it.

Dr. Kawuma directed our attention to some WHO standards concerning community based rehabilitation (CBR). I am not aware if any ILEP member was contracted with intimate knowledge of anti-lepory work in Indonesia http://www.ilep.org.uk/ilep-co-ordination/leprosy-around-the-world/asia/bangladesh/ilep-co-ordination.

This project proposal certainly touches a nerve. This is because I strongly believe that a “superb Habitat for People with Leprosy!” (quote – your mail ) in effect amounts to “superb segregation”. I understand that this is a strong argument. However, relevant for our work is the Alma Ata declaration, and anti-leprosy work is best when it is following a sustainable, rights-based approach that seeks to make a system change. Please allow me to quote Pope Francis: “Changing structures without generating new convictions and attitudes will only ensure that those same structures will become, sooner or later, corrupt, oppressive and ineffectual.” (EG).

One does not need to be catholic to acknowledge the problematic relation of (Western) funding mechanisms driven by “charity”, and a certain project type in the global South (“direct support”). Everybody will be happy to “receive a simple small house” – but what are the selection criteria? What will the person across the street without a house (may be affected by diabetes?) be told? All of us have seen to many orthopedic workshops for people affected by leprosy who turn away patients with diabetes feet, or leishmaniosis.

Since many years our anti-leprosy work all too often falls short of overcoming old attitudes. Why is that so? Because, unfortunately, the type of project that is suggested will create unintended negative impact – but it will not fail to attract a certain type of Western donors who long for visible, “direct” help.

However, it is our obligation to facilitate new ways of thinking.  If we seek to doing so, there will be a need of discussing old and new approaches.

Therefore, I am looking forward to an intense + enriching debate on this subject in this mailing list.

Again, let me assure  my highest appreciation of Dr Harun’s genuine concern for people affected by leprosy. It is a bit unfortunate that I am travelling, so that I do not have as much time as I would like to have to comment on the project proposal in greater detail. Dr. Harun, please feel free to approach me via skype in order to engage in a personal conversation.

 

Yours sincerely,

Matthias Wittrock 

Mag. Matthias Wittrock | Geschäftsführer/Managing Director

Aussätzigen-Hilfswerk Österreich | Austrian Leprosy Relief Association

Belruptstraße 21 |A-6900 Bregenz | Austria | phone: +43-(0)5574-62388-12 | fax: +43-(0)5574-62388-4

mwittrock@aussaetzigen-hilfswerk.at | skype: mjw.aussaetzigen-hilfswerk | www.aussaetzigen-hilfswerk.at

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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

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