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Friday, July 31, 2015

(LML) Smoking and leprosy

 

Leprosy Mailing List – July 31,  2015

Ref.:    (LML)  Smoking and leprosy

From:  Cairns Smith, Aberdeen, UK


 

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  


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


 

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 


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, July 30, 2015

(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

 


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)


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


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


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, July 29, 2015

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

Leprosy Mailing List – July 29,  2015

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

From:  PK Gopal, IDEAL India


 

 

Dear Dr Pieter Schreuder,

 

I appreciate the initiative taken by Dr Muherman Harun for Socio - Economic Rehabilitation of people affected by leprosy - habitat for people affected by leprosy. 

 

From his mail I understand his careful planning of the Project.  I have done Socio - economic rehabilitation of leprosy affected people in Tamil Nadu State, India for 25 years starting from 1972.  I started the work when I was working as a Rehabilitation officer in a big leprosy hospital in charge of the Rehabilitation Department after my Post Graduation in Social Work.  If we can win the confidence of the people affected by leprosy any programme for them will be successful.      

 

It is very important first to make them develop a positive attitude about themselves and about the programme.  They should feel it is their project and they should own it - A willing participation. To give individual responsibility is better.  They should elect their own leader and a committee of people affected to run the programme.  The Facilitator from outside should be a well-trained Social Worker.  Funds in the beginning should not be a problem.  The affected people should be trained in the management, accounting, of the Project, Government Welfare programmes, etc. It is called Skills Development Training.   They should feel that the success of the Project will make them empowered people.  The children of the affected people should be given proper attention for their education.

 

It is also better to involve the organisation of affected people in Indonesia, called as PERMATA.  

 

When I was a Member of ILEP Medico-Social Commission ILEP published a book “Guidelines for Socio Economic Rehabilitation. This may be referred for guidance.   Also the "WHO Guidelines on Participation of people affected by leprosy in Leprosy Services" will also be helpful.  

 

I wish them all success in the Project. 

 

Dr P.K. Gopal,

President,

IDEA INDIA

< drpkgopal@gmail.com >

 


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 29,  2015

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

From:  Wim van Brakel, Amsterdam, the Netherlands


Dear Pieter, 

I can’t resist a response. I agree with Dr Noto (LML, 28-07-2015). I suspect that, despite all the good intentions, this project will end up promoting stigma against leprosy – the notion that persons affected by leprosy are somehow different and therefore need to treated differently (whether worse or better!). The proposed settlement will comprise 70% leprosy-affected persons, so will be perceived as a very privileged leprosy settlement. Much better to spend the same money on promoting genuine inclusion of these families in their own communities, preferably through services/facilities that are available for other disabled persons or disadvantaged community members also. An example of how this can be done in the Indonesian context can be seen in the SARI Project in Cirebon, West Java.

 

With best wishes,

 

Wim van Brakel


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, July 28, 2015

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

Leprosy Mailing List – July 28,  2015

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

From:  Salvatore Noto, Bergamo, Italy


Dear Pieter,

Thank you to Dr Muherman Harunto for his LML message dated July 20, 2015.  It was about the plans to set up a "Habitat for people affected by leprosy" in Eastern Indonesia.

I think that "land, simple small house, well, best seeds" and so on can be provided to selected people within the framework of socio-economic rehabilitation activities but, not to people who suffered from a disease.  As far as possible people affected by any disease should be treated for their disease and then, live in the community with us all. Eligibility to socio-economic rehabilitation is the real issue.  Put people together because they had this or that serious disease is "segregation".


Your sincerely,


S. Noto
Verdellino, Bergamo, Italy


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 28,  2015

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

From:  Muherman Harun, Jakarta, Indonesia


Dear Pieter,

Thank you to Dr Muherman Harunto for his LML message dated July 20, 2015.  It was about the plans to set up a "Habitat for people affected by leprosy" in Eastern Indonesia.


I think that "land, simple small house, well, best seeds" and so on can be provided to selected people within the framework of socio-economic rehabilitation activities but, not to people who suffered from a disease.  As far as possible people affected by any disease should be treated for their disease and then, live in the community with us all. Eligibility to socio-economic rehabilitation is the real issue.  Put people together because they had this or that serious disease is "segregation".


Your sincerely,


S. Noto
Verdellino, Bergamo, Italy


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 28,  2015

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

From:  Muherman Harun, Jakarta, Indonesia


Dear Pieter, 

Thank you for the questions posed by Dr. Joseph Kawuma, LML 22-07-2015. Our  objective is not to open up new Leprosaria,  where people with Leprosy are in quarantine, isolated in lugubrious places, where their future is dark, as the night without light.

In our concept, we want to set up a community of people affected by Leprosy who are happily willing and enthusiastically agree to join our project called “Superb Habitat for People with Leprosy!”

Summarizing our concept:

First of all, we will select a location which is proven fertile, with sufficient water supply, a comfortable climate, and friendly neighbouring people accepting people affected by Leprosy in the project with the size of 200 Ha (up to 2 Ha per family), where there are no natural disasters or man-made clashes (tribal, religious or political), situated near a big city for marketing and a hospital for serious illness.

What we have in mind, is to empower the community as a whole, comprising some 100 families, carefully selected,  who are deemed conducive, potentially capable  to plant a vegetable garden ¼ or ½ Ha for their own consumption so that within 2 years, whilst receiving limited financial, and selected material assistance, they can sustain  themselves (no more help from outsiders is needed).

1.     Every family gets a simple and small house, a well with clean water and electricity. There will be one motivator, for every five families to diligently work on the field. One tractor is provided for each motivator to expedite cultivation.

2.     An experienced and a fully trained nurse with an assistant will be recruited for treating wounds, injuries and for the early detection and treatment of the disease.

3.     A piece of land is plotted for experimentation of plants and trees selected to produce highest yields of the best quality and marketing values.

4.     Public and social facilities, as well as religious and security services will be provided in line with the progress of the project. 

 

Before admission, all inhabitants have to agree (gladly!)  to be trained and professionally guided by relevant experts to locally, produce the best agricultural products, livestock, fisheries etc. so that after 5 years  they will be productive, capable to supply the needs of  local markets with their superior produce.

Experts in local community development, cooperatives and marketing will further guide and assist on all details of the project development to be carried out in a sphere of mutual understanding and respect. We are used to practice open management with transparent accountability.

This kind of community empowerment project, which is unique in Indonesia, should be instrumental in the over-all rehabilitation of the physical, socio-economical, mental and spiritual conditions of  the people affected by Leprosy. If successful, it may serve as a prototype for other organizations to apply community empowerment of people affected by Leprosy.

Meeting sponsors’ demand, the Habitat will also accommodate people with disability up to 20 %; whereas 10% is reserved for other most impoverished people.

Our plea: We are eager to give our best service to the people affected by Leprosy, deprived from it for ages.

Given the opportunity, our mission is: To help people affected by Leprosy to get back their trust in humanity, gain confidence and self-respect, eventually their basic rights and human dignity.

This, I admit, is a grand project, for which pertinent information is highly appreciated.

 

Thanking you for your interest,

Muherman Harun

Jakarta, Indonesia


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, July 22, 2015

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

Leprosy Mailing List – July 22,  2015

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

From:  Joseph Kawuma, Kampala, Uganda


 

Dear Pieter,

 

This is in response to the inquiry from Muherman Harun (LML, July 20, 2015).

 

I think there is lots of literature about LEPROSARIA. A few that I knew actually began with ideas quite similar to those of Dr Harun. If possible he should provide some more basic information about the target population.

There is mention of "we" and "the Rajahs" in this decision, what about the leprosy affected persons: was this their decision or the best choice out of several options?

Would they be able to do gardening as their preferred income generating activity? Would they be happy about living in this large expanse of land where the entire neighbourhood comprises leprosy affected persons?

 

A little more detail in this direction would perhaps prompt readers to advise on the kind of literature review needed.

 

H Joseph Kawuma

GLRA, Uganda

 


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) plantar ulcers - survey new events

Leprosy Mailing List – July 22, 2015

Ref.:    (LML) plantar ulcers – survey new events

From:  William Faber, Soest, the Netherlands


 

Dear Pieter,

Referring to the letter of Dr. Jingquan Wang, LML 20-07-2015, an ulcer as such is not an injury but the consequence of an injury to the skin.

When an ulcer is healed a recurrence can be considered as a new event.

Important is to properly classify an ulcer: superficial - deep; non-infected – infected.

The Dutch Neuropathic Foot Society did develop a registration form which could be used for all cases of ulcers in neuropathic feet as for instance diabetes  and leprosy (already mentioned by Erik Slim). The so called FINU form means Foot - Ischaemia - Neuropathy – Ulcer. This form can be used for registration and is very useful for follow-up.


Greetings,

 


William R Faber

 


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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Monday, July 20, 2015

(LML) First Paleopathology Seminar, Federal University Espírito Santo, Brazil, 19- 21 of August, 2015


Leprosy Mailing List – July 20,  2015
Ref.:    (LML) First Paleopathology Seminar, Federal University Espírito Santo, Brazil, 19- 21 of August, 2015
From:  Patricia Deps, Espírito Santo, Brazil



Dear Peter,

I've attached information about the First Paleopathology Seminar, Universidade Federal do Espírito Santo, Vitória, Brazil (attached file). On 19 of August, at 11.30 there will be a presentation about “A Lepra Medieval e a Medicina Metafórica de Ramon Llull (1232-1316)” (attached file). Coordinator: Patricia Deps: pdeps@uol.com.br; inscriptions: dms@npd.ufes.br

If it is the interest of your contacts please, could you send these files to them?

Best wishes,

Patricia Deps



LML - S Deepak, B Naafs, S Noto and P Schreuder
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 20,  2015

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

From:  Muherman Harun, Jakarta, Indonesia


Dear Pieter,

We (with Blanche) are planning to set up a Habitat for people affected by leprosy in eastern Indonesia (near Kupang and in Gowa South Sulawesi). In fact the local rajahs (kings) have already agreed to provide the land!

The project accommodates 100 families with 2 Ha of land each to be cultivated. Among the inhabitants we will select 1 motivator for every 5 families. Half of a  hectare will be for gardening for own use. The other 1 ½ Ha for production. Each family will receive a very simple small house, a well etc. During the first two years they are provided their basic needs. They will get the best seeds and other requirements to make their products superior to the local products.  Eventually supplying their products to adjacent markets. To achieve this, we will provide the best available opportunities for them with expert cooperatives and marketing specialists.

In short we are very sincere to set up what we would call,  a community for self-empowerment of people with leprosy. We are looking for literature on this subject and learn about the pitfalls and successes. Is there anyone among your esteemed readers to give us information?

 

Thanks beforehand. Yours sincerely,

 

Muherman Harun


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) plantar ulcers ? survey new events

Leprosy Mailing List – July 20,  2015

Ref.:    (LML) plantar ulcers – survey new events

From:  Jingquan Wang, Zhejiang,China


Dear Pieter,


Thanks for quick response from LML readers.

I am not sure if LML readers know the concept of injury. Injury is the a significant public health problems, which include  traffic crashes, falls, burns, suicide, violence, self-harming, drowning, et al. Injury epidemiology is a new  branch science of epidemiology. I wonder when a leprosy patient with plantar ulcers deteriorated due to long walking, can it be considered as a new injury event?


Looking forward to LML readers more response.


Best wishes,



Jingquan Wang
Chief Physician and Deputy Director
Inpatient Department

Institute of Dermatology of Zhejiang Province,
China,313200
No. 61,Wuyuan Street,Wukang,Deqing,313200
Zhejiang,China.

Academic Secretary of China Leprosy Association since 2010
Science Communication Expert of Leprology of China Association for Science and Technology  since 2013

Deputy Secretary-General of China Leprosy Association since 2015  

Phone:86-572-8296002

Fax:86-572-8078115

E-mail:Jingquanwang.cn@hotmail.com, wjingquan@126.com


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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