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  • IF - Human rights
    disabilities Change your life with human rights Katherine N Guernsey and Penelope J S Stein an easy to read explanation of how to advocate for your human rights Word PDF We have human rights Bret Hesla and Mary Kay Kennedy Advocating Change Together www selfadvocacy org an easy to read explanation of the Convention on the Rights of Persons with Disabilities Word PDF Human Rights Yes Janet E Lord Katherine

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  • IF - Developing countries
    Christian Medical Centre KCMC www kcmc ac tz in Moshi KCMC is a referral hospital and covers the following districts Moshi Rural Moshi Urban Mwanga and Hai and Arumeru and Karatu districts in Arusha The programme work trough CCBRT Kilimanjaro but help s also the families from the other regions At KCMC the IF Network created with Dr M Oneko at KCMC a neuro pediatric Clinic of Spina Bifida and Hydrocephalus Operative care and post operative follow up of children with Spina Bifida and or Hydrocephalus 31 hydrocephalus shunt operations and 4 closures of back Organisation of weekly neuro clinics and monthly continence clinics Follow up of children by multidisciplinary team Intensive follow up and training in continence management bladder and bowel of 52 children by team of paediatrician and 2 Spina Bifida nurses Training CBR and rehab staff on continence management 12 reached 2 special continence management training weeks for parents and children with a total of 22 parents reached Organisation of 7 parent meetings with 70 parents reached The parent group has democratic elected committee that plans and organises agenda independently but with support of the project management Participation in yearly IF African workshop Salaries paid by the programme top up for paediatrician and Spina Bifida nurse other partners Kijabe Kenya Bethany Kids at Kijabe Hospital Bethany Kids at Kijabe Hospital is the children s ward of Kijabe hospital It has a 46 bed capacity and has become the referral hospital in Kenya for neurological patients The hospital has 13 outreach clinics as far as Dadaab North of Kenya border with Somalia 90 of their patients have Spina Bifida and Hydrocephalus Operative care and post operative follow up of children with Spina Bifida and or Hydrocephalus 391 hydrocephalus shunt operations and 195 closures of back Organisation of Spina Bifida and or Hydrocephalus clinics and mobile clinics in 14 areas spread over the country Follow up of children by multidisciplinary team Intensive follow up and training in continence management bladder and bowel of 101 children by team of specialised Spina Bifida nurses 1 special continence management training session for parents and children 50 reached and professionals 8 reached Organisation of 31 local parent meetings spread over 4 sites Nairobi Naivasha Mombassa and Joytown The leadership of the groups plan the agendas of the meetings with support from the project management Provision of folic acid to all mothers in the project Participation in yearly IF African workshop Salaries paid by the programme 4 Spina Bifida nurses other partners Mbale Uganda CURE Children s Hospital Uganda The CURE Children s Hospital of Uganda has become the referral hospital for Spina Bifida and Hydrocephalus in Uganda It works closely together for follow up of the children operated with the Katalemwa Cheshire Homes of Kampala in Kampala Uganda Focus has been on treatment of and research on Hydrocephalus CURE Children s Hospital of Uganda became the expert on alternative surgery of Hydrocephalus with ETV making with an endoscope a natural bypass of the

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  • IF - Developing countries
    integration in school the workplace and society in general like IF looks with the families at what is needed to improve their life and how the local health system has to be improved so that their children can reach their full potential The advantage is that all input is used to benefit the target group directly A realistic view of their problems is described in terms of where have successes been achieved what went wrong why what can IF do to improve the local situation Beginning at the end of the chain the if programme empowers the poor and contributes to the improvement of the entire health care system From bottom to top from daily care to research and prevention from CBR to neuropeadiatrics Listening to the parents stories the programme receives information on the causes of the disabilities This is the heart of the prevention programme in which folic acid vaccination and improving the local general health system are vital elements The IF programme does not set up or fund a complete health care system for their target group but improves the existing potential The main input is empowering parents and patients organisations training of the existing staff at all levels and sharing information and expertise Directly and indirectly this has a positive influence on the entire care system of a region A health system that learns to take care of poor patents with spina bifida and hydrocephalus is at the same time developing the capacity to solve many other medical problems Examples of good practice In the past 5 years the IF programme developed several examples of good practice in co operation with our local partners This has resulted in the development of parent groups training material an effective CBR approach good surgery at low cost efficient pre

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  • IF - Developing countries
    may be accompanied by a number of problems They are prone to infection especially within the first 3 months after operation Shunt infections are life threatening and expensive and treatment is time consuming VP shunts are also prone to malfunction One recent large multi institutional study found that 40 of patients required a shunt revision within 2 years of initial shunt placement Given a lifetime of shunt dependency these problems are especially dangerous when access to competent care is difficult An alternative treatment is endoscopic third ventriculostomy ETV This treatment is minimally invasive It also avoids infection shunt dependency the potential for shunt malfunction and the cost of a shunt ETV perforates the lower section of the third ventricle which allows Cerebro spinal fluid CSF to escape from the ventricles into the subarachnoid spaces from which it is subsequently absorbed If the hydrocephalus is caused by an obstruction to CSF flow within the ventricles obstruction to the normal CSF outflow from openings in the IVth ventricle or obstruction to CSF flow within the basal subarachnoid spaces around the fourth ventricle the ETV will bypass any of these obstructions and relieve the problem if the normal CSF absorptive mechanisms are functioning adequately Policy individual requests for help IF does not have a policy of supporting individual requests For individual support in developing countries IF collaborates with the LilianeFoundation When a child with hydrocephalus arrives at a project a medical consultation at a health centre is always advisable For children under the age of 2 it is always important that they are examined by a doctor Children over the age of two with symptoms of so called overpressure need to be seen by a doctor as soon as possible Older children or young people with a stabilised hydrocephalus do not have to

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  • IF - Developing countries
    complications have improved the quality of life Guidelines for treatment Spina Bifida Dr Carla Verpoorten medical adviser to IF prepared a document on the care of children with spina bifida in developing countries Guidelines for the management of spina bifida were prepared by the participants of the 12th CPEP Seminar at KCMC September 2000 coordinated by Dr M Oneko c o KCMC Paediatric Department and Dr M Nicol Dar es Salaam The neurogenic bladder and bowel The kidneys are especially vulnerable to damage from pressure and recurrent infection within the first year of life 10 of children with myelomeningocele MM will develop a dilatation deformity within the first year of life and 35 by the time they are four years old Furthermore it has been reported that over 50 of MM children have a dangerous bladder having an active sphincter with or without an active detrusor Therefore a management protocol to protect renal function in these children is of vital importance The milieu of a developing country necessitates an innovative approach to the management of these children since practicality and compliance are essential to its success Read the protocol on the management of the neurogenic bladder for children in developing

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  • IF - Developing countries
    Hospital of Uganda which was published in 2004 demonstrates the results for ETV endoscopic third ventriculostomy as the primary treatment in 300 children with hydrocephalus This is the largest study of its kind to be reported It was found that infection in the neonatal period was the single most common cause of hydrocephalus in Uganda Management of the neurogenic bladder in children with spina bifida and after spinal trauma in cooperation with 3 local partners and the KUL Catholic University Leuven IF compares the renal and bladder function in children who were treated and followed proactively in the first 2 years of life with children whose treatment was delayed longer than 3 years until the continence problem became an issue Through thorough documentation with the collected data IF hopes to proof that with ultrasound and retrograde cysturethrogram associated with a simplified cystometric evaluation early detection of the hostile bladder is possible and can substitute standard urodynamics IF contributions to research projects Combined endoscopic third ventriculostomy and choroid plexus cauterization for Hydrocephalus in infants and children with special emphasis on the developing world Dr Warf BC Quality of life for families with spina bifida in Kenya Trop Doct 2008 38 160 162 by van t Veer et al under supervision of Dr Poenaru and Dr Bransford Clean Intermittent Catheterization Overview of Results in 194 Patients with Spina Bifida Agnes Jeruto RN Dan Poenaru Richard Brainsford Published in The African Journal of Paediatric Surgery Hydrocephalus in Uganda the predominance of infectious origin and primary management with endoscopic third ventriculostomy Dr Warf BC Journal of Neurosurgery Pediatrics 1 102 1 15 2005 Comparison of 1 year outcomes for the Chhabra and Codman Hakim Micro Precision shunt systems in Uganda a prospective study in 195 children Dr Warf BC J Neurosurg Pediatrics 4 102

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  • IF - Developing countries
    other children in a situation similar to hers For one and a half year now Annette catheterises her daughter Before she used to have urinary infections Now they have ceased My husband is a carpenter and I have a small enterprise selling things she tells A fourteen year old girl tends to Veilda when I work But I hope for my daughter that she will have the opportunity soon to start in a school preparatory children s activity and later on preferably go to an ordinary school If it turns out to be impossible I wish that we as parents can get a special school of our own started The individual meetings with all those parents are intensive emotional The many sick children that we encounter stay before our eyes with their pressure wounds big heads infections of various kinds but also the many well functioning children who get along surprisingly well in simple poverty stricken environments because they can keep themselves dry because they have had help from the Norweigans who supplied them with shunts because they have parents who love them and try to get organised and educated about their children s disabilities in an everlasting movement forward All this put together is an experience which will make you look on Africa in a different way than before You will never see it from the outside again instead you have it within you always and whenever pictures from Africa flash by on media screens up CCBRT Disability Hospital Dar es Salaam Tanzania CCBRT Comprehensive Community Based Rehabilitation Tanzania is a private Non Governmental Tanzanian Society NGO registered under the Tanzanian Societies Act N SO8261 on October 12 1994 The goal ofis to contribute towards poverty alleviation by responding to the lack of accessible and affordable services for disabled people in Tanzania who are among the poorest of the poor A survey highlighted an extreme shortage of preventative curative and rehabilitation services for people living with disabilities in addition to AIDS patients and orphaned children The disability hospital was build with a special ward for Spina Bifida and Hydrocephalus sponsored by the IF Network There was a need to have a better impact on the surgical conditions to improve the quality of care Official partners since 1998 CBR Kilimanjaro CCBRT Tanzania Kilimanjaro Community Based Rehabilitation located on the slopes of Mt Kilimanjaro in northern Tanzania offers rehabilitation and preventive services for the disabled in their local communities Kilimanjaro CBR began operating in 1996 and now covers mostly the Kilimanjaro region CBR Kilimanjaro prepares and refers children who need surgery to CCBRT in Dar es Salaam or Kilimanjaro Christian Medical Centre KCMC www kcmc ac tz in Moshi KCMC is a referral hospital and covers the following districts Moshi Rural Moshi Urban Mwanga and Hai and Arumeru and Karatu districts in Arusha The programme work trough CCBRT Kilimanjaro but help s also the families from the other regions At KCMC the IF Network created with Dr M Oneko at KCMC

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  • IF - Developing countries
    Bifida in East Africa For Hydrocephalus the incidence is even higher due to a combination of congenital and acquired forms sequels of inadequate treatment of meningitis It is impossible at this stage of the programme to serve all cases Therefore the programme is needed to invest in research that can be used in prevention of the two disabilities In Malawi Uganda and Tanzania the first steps are taken towards registration of the incidence of newborns with Spina Bifida Hydrocephalus is mostly caused by inadequate treatment of meningitis Therefore vaccination with Hemophilus Influenza Hib vaccine would be helpful Training of the primary health care workers in detecting and correct treatment of meningitis is mandatory The majority of cases of Hydrocephalus is caused by meningitis often wrongly diagnosed and treated as malaria Further investigation in this matter is needed Treatment of Spina Bifida and Hydrocephalus Where initially the programme thought that the main problem was a lack of shunts and availability of skilled surgeons the problem seems more complex In Dar es Salaam the infection rate after shunting is still too high Pre and postoperative care have been approved by engaging a paediatrician Dr Mushi and a co ordinating doctor Dr Meryl However in Dar es Salaam this major investigation did not result in a good outcome of surgery Better results in Moshi and Kijabe and recently the excellent results of Mbale show that minimum standards of equipment and trained and controlled theatre staff are the guarantee for avoiding infections It is hoped that the new disability hospital in Dar es Salaam will contribute to this goal Protocols about treatment of Spina Bifida and Hydrocephalus have to be set up by the neuro surgeons involved Visiting Malawi and Zambia we found rather good results with locally made shunts Infection rate was acceptable Over drainage was mentioned as a complication without dramatic clinical consequences and in both regions a comparative study of the results of the local and the Chabra shunt was started It is too early to expect results of this survey The programme did not want to replace an efficient local shunt with the Chabra shunt before being sure to be able to improve the situation by doing this Major problems in Moshi Malawi Zambia and Kampala are the availability of theatre space and anaesthesiologists These problems are more common in governmental hospitals where long waiting lists exist In Hydrocephalus patients this can cause extra brain damage Finally the first steps are made to start with Third Ventriculostomy Dar Es Salaam and Mbale are selected to be the two centres were this technique will be started Mbale because Dr Warf a Paediatric Neurosurgeon of the States started to work there in 2000 Dar Es Salaam because it is hoped that the new Disability Hospital will be able to host a workshop mid March 2001 with Dr Vloebergs who is an expert in this technique The experience of the past 3 years stressed the importance of well controlled surgery procedures where the

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