INDONESIA LEPROSY AND DISABILITY CARE MOVEMENT - GPDLI/ Gerakan Peduli Disabilitas dan Lepra Indonesia

SKETCH GPDLI/ Gerakan Peduli Disabilitas dan Lepra Indonesia (INDONESIA LEPROSY and DISABILITY CARE MOVEMENT) 1):

INDONESIA LEPROSY AND DISABILITY CARE MOVEMENT is not come and exist immediately in the community of JAKARTA, BOGOR, TANGERANG, DEPOK and BEKASI areas (Jakarta fringe areas), but this civil society organisation come because so many issues and social problems in our society still exist currently, that issue is about poverty, other communicable and neglected tropical diseases such as Leprosy, Yaws/ Frambusia, Filariasis in Indonesia and total 17 NTD (neglected tropical diseases) in the world and many others. My friends life who infected by leprosy or kusta or Hansen changes the founder of GPDLI/ Indonesia Leprosy and Disability Care Movement heart since many years ago, he involved in many social activities since senior high school student in Medan North Sumatera up to University student in Yogyakarta, he cares deeply with many issues in Indonesia marginal people with specialization in their justice fulfilment for their own development, family and their community anywhere, anyplace and all circumstances. As an Architect who always travel and meet many people in Indonesia and around the world has been made him see clearly, sensitive and transparently to catch the message from people affected by leprosy, started from his research visit (approximately in 1980s) in a leprosy village in Lau Simomo (Karo Highland, North Sumatera, not too far from Berastagi and Kabanjahe/ and Sinabung volcanic mountain) for a community site planning and design project in Sibolangit, he was very shocked with the situation and condition of people affected by leprosy there since hundred years ago up to this information age. The community who live around this settlement did not accepted them genuinely and openly (I think up to date !, it is reflected while I visited there with a biggest Leprosy organisation couple years ago), they felt very frightened with health issues (communicable diseases issue) and the most important one : STIGMA and DISCRIMINATION since many years ago developed in their own paradigm. Since 2005 the founder of GPDLI had been developing the network up to now, which is very effective in Indonesia community, to make this issues as a mainstream news in the media and issues in the society is not easy and it cannot developed in a very short time frame. But with VISION and MISSION plus VALUES involved in GPDLI ACTION we will make a transformation genuinely in Indonesia society heart and minds, especially, JAKARTA, BOGOR, TANGERANG, DEPOK and BEKASI areas, and then whole Indonesia and Asia, Africa etc. There are many works and actions that we should develop with People affected by leprosy in near future, we hope that many of them who still affect and affected by leprosy could change their own life by their efforts and success and bold mind and heart, GPDLI just work as a BRIDGE to bring them to another better level of their own life by help themselves to see the bright future for individual, family and their/ our society. Let us work together wherever we works and serves people and civil society, from Zero to Hero from Nothing to be Worthwhile, including people with disabilities especially who live in leprosy community anywhere in Indonesia, started from our own places in Indonesia and others. Hopefully we could bring them from marginality of their life (which is deeply drought with this circumstances from long time and never ever stop!) and then transformed to have empowerment and finally independent wherever them involve and work in our society. SALAM SOBAT GPDLI (GREETINGS from FRIENDS OF GPDLI)

As a appreciation and gratitude to our friends with disabilities and affected by leprosy, we present this dedication as a powerful solution to bridge the incondusive situation in many years, SMALL STEPS but if we do that consistently then we will see significant transformation in near future, believe that this will happening soon. Based on Architectural Planning and Design which I learned since 1980s up to date there should be a equilibirium senses between MIND and HEART, these make a significant and sustainable development whereever we go, including developing GPDLI concern. If you are interested to be a volunteer, supporter, or other circumstances please do not hesitate to contact us throgh this below email: gpdli@hotmail.com – and coming soon our newly website in www.pedulidisabilitas.org

http://www.who.int/neglected_diseases/en/ 1. Over 1 billion people are affected by one or more neglected tropical diseases (NTDs).They are named neglected because these diseases persist exclusively in the poorest and the most marginalized communities, and have been largely eliminated elsewhere and thus are often forgotten. 2. There are 17 diseases currently listed as NTDs.Most can be prevented and eliminated. They thrive in places with unsafe water, poor sanitation, and limited access to basic health care. They cause severe pain and life-long disabilities and are often less visible and have a low priority. 3. Neglected tropical diseases thrive in conditions of impoverishment.They are mostly concentrated in settings of extreme poverty in remote rural areas, in urban slums or conflict zones. Those affected are poor and have little political voice. 4. Testing for NTDs can cost as little as 4 US cents.For some NTDs, there are simple and affordable diagnostic tools which cost as little as four US cents per test. However, for the rest, the currently available diagnostic tools require skilled health workers and hospitalization. People in remote areas often become ill or die before the disease can be diagnosed. 5. Medicines for some NTDs cost as little as 2 US cents.Medicines for some of the NTDs are safe, inexpensive (as low as two US cents per tablet) or even distributed free. They can be administered by trained non-medical staff, like teachers, and community health volunteers. For other diseases, some of the medicines still being used were developed in the 1920s. Others are toxic, expensive and often in short supply. They can even be lethal if they are administered poorly. 6. Overcoming NTDs has allowed 25 million fertile hectares to be resettled.The economic impact of NTDs can be staggering. People used to flee fertile river valleys infested with the black fly in Africa and settle in less productive regions. More than 25 million hectares of previously infested land have now been resettled, allowing people to plant crops and raise cattle. Also, the tsetse fly - one of the several insect vectors transmitting NTDs - has been eliminated through aerial spaying of insecticides and hanging traps (seen in the photograph). 7. In 20 years countries with leprosy has fallen from 122 to 6. With the right medicines and services comes success. Over the past 20 years, 116 of 122 endemic countries have eliminated leprosy as a public health problem. During 2007, both the Democratic Republic of the Congo and Mozambique reached this important stage. Since the introduction of multidrug therapy in 1985, 14.5 million people have been cured of leprosy. 8. Dracunculiasis cases have fallen from 3.5 million to 3190. Dracunculiasis, also known as guinea worm disease, is transmitted through contaminated drinking water and is now found only in remote villages. It is now on the verge of eradication through surveillance, education and inexpensive interventions such as water filtering. The number of cases has fallen from 3.5 million in the 1980s to 3190 in 2009. 9. New medicines now protect against Buruli ulcer, leismaniasis and lymphatic filariasis. Buruli ulcer, leismaniasis and lymphatic filariasis all deform and disfigure to such an extent that those affected can be ostracized. New, inexpensive medicines now protect millions of people from these diseases, enabling them to lead a normal social life. 10. Programmes tackling NTDs are technically feasible and highly cost-effective. Neglected tropical diseases are now on the international agenda. The successes achieved to date prove that the interventions are technically feasible, immediate, visibly powerful and highly cost-effective. They demonstrate that programmes to tackle NTDs can be, and must be rapidly scaled up. NOTES: Leprosy or Hansen's disease (HD), is a chronic disease caused by the bacteria Mycobacterium leprae and Mycobacterium lepromatosis.[1][2] Named after physician Gerhard Armauer Hansen, Leprosy is primarily a granulomatous disease of the peripheral nervesand mucosa of the upper respiratory tract; skin lesions are the primary external sign.[3] Left untreated, leprosy can be progressive, causing permanent damage to the skin, nerves, limbs and eyes. Contrary to folklore, leprosy does not cause body parts to fall off, although they can become numb and/or diseased as a result of infection.[4][5] Filariasis (Philariasis) is a parasitic disease and is considered an infectious tropical disease, that is caused by thread-like filarialnematodes (roundworms) in the superfamily Filarioidea,[1] also known as "filariae".[2]

Neglected tropical diseases - Frequently asked questions What are the neglected tropical diseases? Neglected tropical diseases* are primarily infectious diseases that thrive in impoverished settings, especially in the heat and humidity of tropical climates. Most are parasitic diseases, spread by insects ranging from mosquitoes, blackflies, and snails to sandflies, tsetse flies, the “assassin bug”, and so-called flies of filth. Others are spread by contaminated water and soil infested with the eggs of worms. Transmission cycles are perpetuated under conditions of environmental contamination. Environmental contamination, in turn, is perpetuated by poor standards of living and hygiene. Once widely dispersed, these diseases are now concentrated in settings of extreme poverty, in urban slums or conflict zones and thrive in conditions of impoverishment. Elsewhere, in large parts of the world, these diseases gradually disappeared as standards of living and hygiene improved. -----------------------------------

• The list is not exhaustive and has regional and national variations. WHO is currently focusing on 17 neglected tropical diseases: Dengue, rabies, trachoma, Mycobacterium ulcerans infection (Buruli ulcer disease), endemic treponematoses, leprosy (Hansen disease), Chagas disease (American trypanosomiasis), human African trypanosomiasis, leishmaniasis, cysticercosis, dracunculiasis (guinea-worm disease), echinococcosis, foodborne trematode infections, lymphatic filariasis, onchocerciasis (river blindness) schistosomiasis (bilharziasis) and soil transmitted helminthiasis. (WHO)

• Buruli Ulcer • Chagas disease(American trypanosomiasis) • Dengue/dengue haemorrhagic fever • Dracunculiasis (guinea-worm disease) • Fascioliasis • Human African trypanosomiasis • Leishmaniasis • Leprosy • Lymphatic filariasis • Onchocerciasis • Rabies • Schistosomiasis • Soil transmitted helminthiasis • Snakebite • Trachoma • Yaws

OUR NEWLY formed organosation called : GERAKAN PEDULI DISABILITAS dan LEPRA INDONESIA (English: INDONESIA LEPROSY and DISABILITY CARE MOVEMENT) – with NUAH P. TARIGAN, HERMEN M. HUTABARAT and AMIR ALRAFATI with friends. © copyright by GERAKAN PEDULI DISABILITAS DAN LEPRA INDONESIA (GPDLI)