Leprosy Mailing List – December 12, 2016
Ref.: (LML) Competent leprosy services
From: Jaison Barreto, Bauru, Brazil
Dear Pieter,
Thanks for the writings "competent leprosy services" by Joel Almeida of December 10, 2016.
What we have seen in the last 10 years in Brazil about leprosy:
Progressive destruction of reference centers, with more and more leprosy cases being misdiagnosed as rheumatism, allergy, mycosis and other diseases!
No more leprosy in-service-trainings for health professionals were stimulated by the last government. The international leprosy organizations went away from Brazil, causing a catastrophic condition as the physicians, who are in the field and stay in the same municipality for one year or less, do not receive training in leprosy anymore. At universities they learn almost nothing about leprosy. The material available in internet works only for those that were trained in service at least a little bit. Fear and prejudice is still high in our country.
I have been in the field many times in the past 10 years, training health professionals to suspect and diagnosing leprosy cases. I have trained as such more than 10,000 new professional, with funds from GLRA and Fontilles. Unfortunately, those ILEP members left our country. More than 1000 leprosy patients were diagnosed during these trainings. In areas were GLRA/Fontilles worked the detection did not fall, but the number of grade 2 disabilities found among new cases were extremely low compared to other areas not covered by this training program.
During the last government, professionals who worked in the field, like me, training other colleagues and finding several new cases, were put under pressure in Brazil, as leprosy elimination goal should be reached, even by lies and false statistics.
Thanks God that now we have a new government in Brazil, where our Ministry of Health and the new National Leprosy Coordination is trying to recover our country from the destruction of the National Leprosy Program left by the last government.
I am sure we will really eliminate leprosy, in decent time, not by statistical lies and with misdiagnosis, but by training all health professionals, finding all active leprosy cases and treating them, breaking transmission chain and doing the household contact follow up.
Regards,
Jaison
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 14, 2016
Re: (LML) Competent leprosy services
Monday, December 12, 2016
(LML) Competent leprosy services
Leprosy Mailing List – December 12, 2016
Ref.: (LML) Competent leprosy services
From: Jaison Barreto, Bauru, Brazil
Dear Pieter,
Thanks for the writings “competent leprosy services” by Joel Almeida of December 10, 2016.
What we have seen in the last 10 years in Brazil about leprosy:
Progressive destruction of reference centers, with more and more leprosy cases being misdiagnosed as rheumatism, allergy, mycosis and other diseases!
No more leprosy in-service-trainings for health professionals were stimulated by the last government. The international leprosy organizations went away from Brazil, causing a catastrophic condition as the physicians, who are in the field and stay in the same municipality for one year or less, do not receive training in leprosy anymore. At universities they learn almost nothing about leprosy. The material available in internet works only for those that were trained in service at least a little bit. Fear and prejudice is still high in our country.
I have been in the field many times in the past 10 years, training health professionals to suspect and diagnosing leprosy cases. I have trained as such more than 10,000 new professional, with funds from GLRA and Fontilles. Unfortunately, those ILEP members left our country. More than 1000 leprosy patients were diagnosed during these trainings. In areas were GLRA/Fontilles worked the detection did not fall, but the number of grade 2 disabilities found among new cases were extremely low compared to other areas not covered by this training program.
During the last government, professionals who worked in the field, like me, training other colleagues and finding several new cases, were put under pressure in Brazil, as leprosy elimination goal should be reached, even by lies and false statistics.
Thanks God that now we have a new government in Brazil, where our Ministry of Health and the new National Leprosy Coordination is trying to recover our country from the destruction of the National Leprosy Program left by the last government.
I am sure we will really eliminate leprosy, in decent time, not by statistical lies and with misdiagnosis, but by training all health professionals, finding all active leprosy cases and treating them, breaking transmission chain and doing the household contact follow up.
Regards,
Jaison
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 10, 2016
(LML) Competent leprosy services
Leprosy Mailing List – December 10, 2016
Ref.: (LML) Competent leprosy services
From: Joel Almeida, Mumbay and London
Dear Pieter,
Mr. X was a person disfigured by leprosy. I knew him well for many years. He shared personal stories about how his life was turned upside down by the disfigurements of leprosy. His family had all emigrated from India to various affluent countries. But he remained in India, living among others disfigured by leprosy and serving them.
One thing he said will stay with me till the end of my life:
"Even the whores won't take my money."
That brought home to me, more powerfully than anything else, how deep were the emotional wounds accompanying the disfigurements of leprosy, and how thorough was the exclusion and isolation.
I had the good fortune also to enjoy the personal friendship of Drs. Paul and Margaret Brand. When Dr. Paul Brand first went to India, he was told by other doctors that if leprosy patients were allowed into a hospital, all the other patients would run out. This only boosted his determination to find solutions. Both of the good doctors faithfully kept finding solutions for these people who were shunned and neglected by most others.
But for the compassion and dedication of such giants, including Mahatma Gandhi, Baba Amte and many others, people affected by leprosy would have continued to be shunned and neglected for much longer. This compassion formed the slender thread by which hung services for people affected by leprosy.
Our scientific understanding of leprosy, particularly in microbiology, pathology, epidemiology and public health, has since advanced. We know that inexpert services for leprosy are near-useless. Because then people with lepromatous leprosy, through no fault of theirs, go undetected for years. And people with silent neuritis, through no fault of theirs, suffer avoidable permanent nerve damage and disfigurement.
What is our response to inadequate and inexpert leprosy services?
One proposal is to dilute the expertise even further, by diverting already inadequate resources from leprosy to other problems. We would abandon competent leprosy services so that we could join others who are working on other problems. In effect, we would condemn people affected by leprosy to avoidable disfigurement, since leprosy expertise is scarce and irreplaceable.
Drs. Paul and Margaret Brand, along with Mahatma Gandhi, Baba Amte, would probably cringe at these proposals. People who understand the microbiology, pathology, epidemiology, clinical and public health aspects of leprosy, would laugh, or weep.
Fortunately governments such as those of India, and organizations such as The Leprosy Mission International, remain committed to boosting the expertise in leprosy services. Without that expertise, we might as well shut down leprosy services and join the many who shun people affected by leprosy.
People disfigured by leprosy have been speaking out, especially in the past decade. They petitioned the Indian parliament to examine their inhumane living conditions. As a result, parliament ordered a sample survey of leprosy in India. The sample survey revealed that the incidence rate of leprosy in India was being under-reported by a factor of up to five. That is, India actually had not 125,000 new cases per year but nearer 600,000 new cases per year during 2008-10.
Meanwhile, a fictitious victory was being proclaimed. This was a triumph for M. leprae and a disaster for leprosy patients. The premature declaration of victory drove talent and resources away from leprosy. Some people, in the face of contrary evidence from the field, still continue to predict an imminent victory. This is damaging to leprosy services.
The incidence rate of newly detected cases with visible deformity at diagnosis has doubled in India, since 2005. This despite spectacular increases in per capita income. The sooner we prepare for a long war, the better.
Concerned citizens took the Indian government to court petitioning for better staffing of leprosy services. They have put leprosy back on the agenda, and the Indian government is steadily ramping up its efforts. More finances are still required, to ensure fully competent services. We need to make a list of the activities and finances required reliably to protect people against the disfigurements of leprosy. Then the scale of the financing gap will become evident, and we can beat the drum loudly on behalf of the population at risk. That's how to raise hundreds of millions instead of tens of millions in financing.
Ordinary people at risk of leprosy have fought a brave battle and gained ground. Let's not be content to gather funds or accolades in the name of leprosy services, while abandoning the people at risk of disfigurement. If they are good enough for our publicity materials then they are good enough for expert services. Let's use our influence and gifts to stand shoulder to shoulder with them, and amplify their voices.
If we waver, let's remember Mr. X being turned away and shunned. Our scientific knowledge and compassion are slender threads. From these threads hang the hopes of people at risk of leprosy and its disfigurements. Let’s not abandon people to the disfigurements of leprosy, through carelessness, ignorance or expediency. We will do better in this long war by holding on to science, field research and compassion.
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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Friday, December 9, 2016
(LML) I was dreaming
Leprosy Mailing List – December 9, 2016
Ref.: (LML) I was dreaming
From: Pranab K Das, Birmingham, UK
Dear Pieter,
Reading the letter by Arry Pongtiku of December 9, 2016, I must admit that I have always been fascinated by the leprologists' capacities of imagination beyond the invisible horizon of untouchable reality, as reflected by "I was dreaming" by great Ben Naafs. Probably that is one of the many reasons, why Leprosy attracts me (a part time researcher).
Kind regards,
Pranab K das
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) I was dreaming
Leprosy Mailing List – December 8, 2016
Ref.: (LML) I was dreaming
From: Jim Wilton, Portland, USA
Dear Pieter,
In response to the last reference on the leprosy mailing list about nerve inflammation and compression with type 1 and type 2 reactions (LML, December 8, 2016), we have seen excellent response to nerve decompression in both groups. The decision for surgical decompression is solely determined by the clinical examination of the patient and failure to steroid therapy. Unfortunately we have not been able to categorize consistency in response with the other group in response two pharmacologic treatment.
Dr. Jim Wilton
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, December 8, 2016
(LML) I was dreaming
Leprosy Mailing List – December 8, 2016
Ref.: (LML) I was dreaming
From: Arry Pongtiky, Irian Jaya, Indonesia
Dear Pieter,
May I refer to: “I was dreaming” by Ben Naafs (LML, November 18 , 2016) about Nerve damage. May be this dream can be translated into pictures and also linked to the issue of Nerve Decompression (LML, November 26 and 28, 2016)
My impression is that this topic is difficult to digest especially for field workers. I would like to share with the readers as I understood it!
Reaction type 1 causes inflammation; it will be easy to get nerve compression because of swelling. Prednisolone functions as anti-inflammation (anti-swelling and avoiding highly cellular response). Existence of mycobacterium leprae in nerves and skin as foreign bodies must be eliminated by immune system/cellular response, it is like a plane attacks and fires the targets. Reaction type 1 will be easier to have disability. Nerve compression can be overcome with steroid and surgery?
Reaction type 2: If too many bacilli (mycobacterium leprae) or after few months treatment, the bacilli in the form of fragmented or decay bacilli come into blood circulation, go far away cause inflammation, because immune system detects as foreign bodies. Antigen and antibody response happened. It will cause inflammation in vascular (vasculitis/pain and red nodules), eyes (iridocyclitis), arthritis (joint), lymphadenitis (lymph vessel), orchitis (testis). The reaction impacts more severe /ill for patient because of systemic response. Steroid and lamprene as well as talidomide , physiotherapy may help/work well for this type. Maybe less impact for surgery. If I did not know about triggers. My experience giving extra antibiotic (amoxicylin for 5 days) may help together with steroid. Looking for trigger factors is a must. Many chronic cases usually are feeling down must be addressed.
Note: giving steroid must be started high dose and do tapering off
Lucio Phenomenon....This was a rare case, severe reaction suspect of Lucio phenomenon. According to Ben Naafs, the Lucio phenomenon is just a blocking of the venules in the skin due to number of bacilli which leads to infarction. I did not have much experience about Lucio phenomenon, as I understood more reported in South America. Our case survived by giving MDT, good nutrition and counseling. At the time we avoided to use steroid because patient was too ill, we were worried about super infection/ sepsis. The trigger factor was pregnancy and the baby was died after delivery.
Thank you very much,
Arry Pongtiku
Papua,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, December 7, 2016
(LML) INFOLEP new publications on leprosy, December 2016
Leprosy Mailing List – December 7, 2016
Ref.: (LML) INFOLEP new publications on leprosy, December 2016
From: Jiske Erlings, 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
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