Epilepsy Project
Sr. Florence is now working in a district health clinic in Ipafu, the sisters of John the Baptist run the clinic. The clinic is named after the Ipafu river. The clinic is situated along the only paved road in the area, this is the road from Chingola to Solwezi. This is the only paved road in the area.The city of Ipafu is situated on a side road, from the main road that leads from Kitwe to Solwezi. This road go’s to the Congolese City off Lubumbashi. The nearest hospital people can be referred to is 30 km from Ipafu. The district health clinic provides care in the rural area from the district Chingola, with an estimated population off 10.145 people. In addition to the clinic there are 5 primary schools and 1 high school in the area.Ipafu is a city in the district off Chingola and is about 1690km2. In comparison with the province of Limburg in the Netherlands is 2209km2. With the 2008 census the city of Chingola has a population of 157,340 people. According to the Central Statistical Office there were 216.626 people living in the district of Chingola and 185.246 people living in the city off Chingola. The province has an altitude of 1363 meters and is not far from the border with the Republic Congo. The roads are in a poor condition. The city has also its own airport where only small aircrafts can land
In this area there are major problems with epilepsy, it is not always well recognized, children and young adults usually don’t get medication or the wright medication. The environment does not always work well with such a disability. Epilepsy is creating social isolation for the children, because parents or caregivers are hiding them in their houses. Epilepsy is a stigma. The parents are often illiterate and also many children are taken care by the grandparents because the parents are already deseeds due to HIV/AIDS. Due to the poor diagnosis and treatment options, the children and young adults are very vulnerable and are at risk of falling behind in there development with subsequent risks in puberty of criminality and sexual abuse which ultimately results in a higher rate of Infection with HIV/AIDS.
The purpose of sr. Florence’s epilepsy project is: To improve the treatment of epilepsy by raising awareness and getting more support within the community.
- Improved adherence regarding medication treatment with anti-epileptic drugs
- Care and support for 100 patients with epilepsy in the Ipafu area
- Informing the community regarding treatment, prevention and support services
- Community participation regarding prevention and care activities
- To defeat the negative attitude, discrimination and stigmatization of people with epilepsy
The project is coordinated from the Ipafu Health Centre. Sr Florence is the project coordinator and she is working with 3 field workers.Volunteers are working in sub-areas. Certain services, such as the technology, are provided by the Health Centre. Specialist help is provided from the 50 km further located hospital. The finances are managed by the accountant from the district health center.
Staff supported by nurses, social and financial staff must be contacted, as well as recruiting and selecting of 16 volunteers. Prior to the implantation of the project, the region is divided into 8 zones.
Activities:
- Training and educating the volunteers according to the CBR principles and train them in how to deal with epilepsy
- Counselling and support for the parents, caregivers and community of the epileptic patients
- Set up a club of young adults with epilepsy
- Offer psychosocial support to children with epilepsy
- Set up programs to contradict abuse and discrimination
- Involving children and young adults with epilepsy in sexual education and HIV/AIDS prevention.
- Active identification of children with epilepsy, organizing support and providing” follow-up” contacts
- Every child has his own medical file for recording the treatment and drug use.
- Developing and spreading information and material about epilepsy and pedagogic material
- Means for communication (GSM)
- Making contact with de schools (primary and high school) in connection to give information about prevention activities
- Developing an active dialog for example via: theatre, discussion groups, and peer contact
- Talk and offering support in risk reduction
- Improve the social economic situation from the parents if needed
The project will be running for two years and will be carefully monitored by the Jonathan foundation and Sister Florence. The Jonathan foundation made a strength and weakness analysis. There are also concrete plans for after the first two years. The project is not directly linked with children with mental disabilities, but a proportion of the children with epilepsy will have a mental disability or a non-innate disability (they will also look at their needs). Due to the lack of good treatment options. There is a possibility that this will lead to a new project regarding children with a mental disability.
The estimated costs for the project are $ 12.000 per year, the Jonathan foundation will cover these costs. Also the government and the clinic are contributing in the costs.Staff, nurses, social health workers and financial staff will be enabled. Also the selection of the 16 volunteers, who already have started.
For more information or photos from the project please have a look at our newsletters.
If any translation is needed please let us know.
Financial committee
Every 2 year the financial books are audited by two board member lead by an independent chairman, Mr. F. Lardinois. For those who are interested, a more detailed financial statement (view) can be obtained on request, from the secretarial.
Financial accountability
The Financial accountability of the years before 2010: see the Newsletters
Newsletters are available on request from the secretariat via the following form or telephone number +3143-4073297
In the year 2016 we once more saw a drop of increasing money and more expenditures. This development over the last two years, is worrying us and the board is trying to find a way to find more donors due to new activities.
| Jear | Income | Expenditure |
| 2021 | € 27,415.44 | € 24.497,17 |
| 2020 | € 76.3366,10 | € 25.326,55 |
| 2019 | € 10.554,30 | € 22.109,98 |
| 2018 | € 9.783,27 | € 12.585,04 |
| 2017 | € 18.592,83* = excl. erfenis € 108.989,04 (zie jaarverslag) | € 4.854,04 |
| 2016 | € 6.911,06 | € 12.184,69 |
| 2015 | € 12.935,54 | € 23.036,30 |
| 2014 | € 23.205,35 | € 23.277,68 |
| 2013 | € 21.197,24 | € 8.500,00 |
| 2012 | € 15.508,50 | € 15.504,50 |
| 2011 | € 14.509,66 | € 16.597,93 |
| 2010 | € 13.650,17 | € 47.233,11 |
| 2009 | € 17.222,31 | € 13.300,00 |
| 2008 | € 36.053,94 | € 84.717,8 |
| 2007 | € 25.754,51 | € 10.487,69 |
| 2006 | € 31.185,21 | € 31,500,00 |
| 2005 | € 11.385,00 | € 21,725,00 |
| 2004 | € 7.703,00 | € 5.195,39 |
| 2003 | € 14.059,00 | € 5.497,00 |
| 2002 | € 11.725,00 | € 7609,00 |
| 2001 | € 7.016,00 | € 23.752,00 |
| 2000 | fl. 19.296,00 | fl. 35.530,00 |
| 1999 | fl. 37.154,00 | fl. 4.024,00 |
| 1998 | fl. 19.319,00 | fl. 0,00 |
| 1997 | fl. 49.732,00 | fl. 71.612,00 |
| 1996 | fl. 19.384,00 | fl. 5.035,00 |
| 1995 | fl. 7.395,00 | fl. 26.884,00 |
