Leprosy Mailing List – May 9, 2019
Ref.: (LML) Infolep monthly overview of new publications on leprosy - May 2019
From: Jiske Erlings, Amsterdam, the Netherlands
Dear collegues,
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Leprosy Mailing List – May 9, 2019
Ref.: (LML) Infolep monthly overview of new publications on leprosy - May 2019
From: Jiske Erlings, Amsterdam, the Netherlands
Dear collegues,
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Leprosy Mailing List – May 9, 2019
Ref.: (LML) Tapering prednisolone
From: Wim Brandsma, Hoevelaken, the Netherlands
Dear Pieter,
Prednisolone is used in the prevention and treatment of leprosy neuropathy (reactions). There is no consensus or evidence-based recommendation about dose and duration of treatment.
Generally speaking, a course for the 'average' patient may start in the range of 40-60 mg and is then tapered over a period of 4-6 months. Many patients 'relapse' when doses are tapered or relapse following weeks/ months after cessation of treatment. The dose may be increased again, or a new course given, before tapering may be started again.
NN, 71 at time of diagnosis with a relatively rare rheumatic condition, RS3PE (Remitting Seronegative Symmetrical Synovitis with Pitting Edema) somewhat overlapping with Polymyalgia Reumatica.
Course of treatment: Prednisolone with very promising cure rates:
Above case study begs the following questions – fully aware that there are no 'standard' leprosy reactions and that two different diseases are discussed but:
Thank you in advance for your reaction,
Wim
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
Leprosy Mailing List – May 7, 2019
From: Ben Naafs, Munnekeburen, the Netherlands
Dear colleagues,
We came upon an interesting story about Leonardo da Vinci and a certain paralysis.
Leonardo da Vinci could have experienced nerve damage in a fall, impeding his ability to paint in later life, Italian doctors suggest.
They diagnosed ulnar palsy, or "claw hand", by analysing the depiction of his right hand in two artworks.
It had been suggested that Leonardo's hand impairment was caused by a stroke. But in the Journal of the Royal Society of Medicine, the doctors suggest it was nerve damage that meant he could no longer hold a palette and brush.
Leonardo da Vinci, who lived from 1452-1519, was an artist and inventor whose talents included architecture, anatomy, engineering and sculpture, as well as painting.
But art historians have debated which hand he used to draw and paint with.
Analysis of his drawing shows shading sloping from the upper left to lower right, suggesting left-handedness. But all historical biographical documents suggest Leonardo used his right hand when he was creating other kinds of works.
For further reading and more details: https://www.bbc.com/news/health-48151105
Ben Naafs
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
Leprosy Mailing List – May 5, 2019
Ref.: (LML) Brazil: UN expert on leprosy to visit
From: Alice Cruz, Quito, Equador
Dear colleagues,
The UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen's disease) and their family members will make her first official visit to Brazil from 7 to 14 May.
"I am eager to learn about measures the central and local authorities are taking to protect and promote human rights of those affected by Hansen's disease, and their family members," said Alice Cruz. "I also intend to identify challenges and gaps in elimination of discrimination and make recommendations."
"My visit will focus primarily on the issues of structural and interpersonal discrimination, anti-discriminatory policies, and the best strategies to reduce the stigma of the disease and foster inclusive development for people affected."
The Special Rapporteur will meet federal and local Government representatives, civil society organisations, leprosy experts, as well as people affected, their family members and their representative organisations. She will visit Hansen's disease communities to discuss their priorities and concerns.
Cruz will hold a press conference on 14 May to share her preliminary observations. It will begin at 11:30 am local time at the Pan American Health Organisation conference room, Lote 19 - Avenida das Nações, SEN, in Brasilia. Access to the press conference will be limited to journalists.
The Special Rapporteur will submit a comprehensive report to the UN Human Rights Council in June 2020.
Alice Cruz
Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members
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Brasil: visita da perita da ONU em hanseníase
GENEVA (3 Maio 2019) – A Relatora Especial para a Eliminação da Discriminação contra as Pessoas Afectadas pela Hanseníase e seus Familiares, Alice Cruz, realizará uma vista oficial ao Brasil desde 7 a 14 de Maio de 2019.
"Esta é a minha primeira visita official como Relatora Especial e estou muito interessada em saber as medidas concretas que as autoridades centrais e locais estão tomando para proteger e promover os direitos humanos das pessoas afectadas pela hanseníase e os seus familiares. Também pretendo identificar desafios e lacunas na eliminação da discriminação contra as pessoas afectadas pela hanseníase com vista a formular recomendações concretas," afirmou Cruz.
"A minha visita concentrar-se-á nos temas da discriminação estrutural e interpessoal, políticas anti-discriminatórias, e melhores estratégias para a redução do estigma e desenvolvimento inclusivo com relação à população específica das pessoas afectadas pela hanseníase e seus familiares", acrescentou.
A Relatora Especial terá reuniões com representantes dos governos federal e locais, orgnaizações da sociedade civil, peritos em hanseníase, bem como com pessoas afectadas pela hanseníase, seus familiares e representantes das suas organizações. Ela visitará colónias de hanseníase e comunidades afectadas pela hanseníase para discutir as suas prioridades e preocupações.
A Relatora Especial dará uma conferência de imprensa no dia 14 de Maio no final da sua missão para partilhar as suas observações preliminares que terá início às 11.30 da manhã hora local na sala de conferências da Organização Pan-Americana de Saúde (PAHO, Lote 19 - Avenida das Nações, SEN) em Brasília. O acesso à conferência de imprensa está limitado a jornalistas. A Relatora Especial apresentará um relatório detalhado ao Conselho de Direitos Humanos da ONU, com resultados e recomendações, em Junho de 2020.
Ms Alice Cruz is the first UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, appointed in November 2017 by the Human Rights Council. Ms. Cruz worked as External Professor at the Law School of University Andina Simón Bolívar – Ecuador and in several Portuguese universities as researcher on health and human rights, in particular leprosy. She participated in the elaboration of WHO Guidelines for Strengthening Participation of Persons Affected by Leprosy in Leprosy Services. She has researched and written on the subject of eliminating leprosy and the stigma attached to it and has interacted with various stakeholders, including persons affected by leprosy.
The Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council's independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.
For additional information before and during the visit please contact in Portuguese, UN Human Rights Adviser Ms. Angela Pires Terto (angela.pires@one.un.org), UN Human Rights Analyst Mr Lorenzo Casagrande (lorenzo.casagrande@one.un.org / Mobile +55 21 967065913)
or in English, UN Human Rights Officer Ms. Younkyo Ahn (yahn@ohchr.org / +41 79 444 5515 )
For media inquiries related to other UN independent experts please contact: Mr. Jeremy Laurence, UN Human Rights – Media Unit (+41 22 917 9383 / jlaurence@ohchr.org)
Follow the UN's independent human rights experts on Twitter @UN_SPExperts
Follow the Special Rapporteur on leprosy (personal pages) on Facebook https://www.facebook.com/srleprosy and Twitter @srleprosy
To subscribe/unsubscribe to these emails, please contact media@ohchr.org
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com