P.O. Box, CH-8703 Erlenbach / Project Report no. 1. Project Harar Ethiopia and

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1 Project Report no. 1 Project Harar Ethiopia and November 2011

2 Growing hope for people with facial disfigurements for Ethiopia Page 1/5 Introduction the project Harar in a nutshell Project Harar Ethiopia s (thereafter «PHE») mission is to secure life-changing surgical treatment and after-care for people with serious facial disfigurements. The NGO s main focus is to organize transportation for cleft, palate, noma and other facial disfigurement patients from the Harar region to the capital Addis Ababa, to ensure an appropriate follow up and to organizes training and awareness campaigns for government officials. PHE is working very closely with so called local social and labour district administrators. This local government administrators are trained by PHE concerning cleft, palate and noma. The aim is build an awareness among the local administrator in order to be able to recognize the disease immediately and take appropriate actions. NOMA-HILFE-SCHWEIZ supported the project in order to focus more on Ethiopia's noma cases. PHE does treat a variety of facial disabilities, and won t ignore other cases than noma. But the support of NOMA-HILFE-SCHWEIZ would ensure to find more noma patients, who will benefit from treatment. Firstly PHE could scale up their outreach and community work. The projects outreach officer Biniyam Mekonen and the operation director Sebsibe Ayele travel throughout eastern Ethiopia, meeting with families and local health officials to raise awareness of noma and find new patients. The Ethiopian team is also holding regular workshops for the same purpose. This ensures that noma survivors get appropriate treatment, and contributes to raising awareness of the condition, enabling communities to take preventative measures early on. PHE is hoping to scale up this work by NOMA-HILFE-SCHWEIZ s financial support. Secondly, the project monitors the success of previous treatment, and as most noma surgery is multi-staged it is vital that the project has the capacity to bring patients back for follow-up treatment. The project, which is been financed by NOMA-HILFE-SCHWEIZ in 2011, has been visited by Adeyinka Onabanjo in November (two visits, one in Addis Ababa and one in Harar) in order to view how the funds were used. NOMA-HILFE- SCHWEIZ is verifying if the points mentioned in the project application have been adhered to and implemented. Erlenbach, November 2011 NOMA-HILFE-SCHWEIZ

3 «We do all we can to help those who need us.» Sebsibe Ayele, operation director PHE Page 2/5 Surgical treatment in Addis Ababa One of PHE s main duty is to organize transportation for noma patients to and from Addis Ababa, who will undergo surgical treatments. Most surgery missions are carried out by Facing Africa, which is working very closely with PHE. As Facing Africa is only organizing approx. two missions per year, PHE is also working with local surgeons who treat cleft and noma patients. Most patients are operated in the Myungsung Christian Medical Center (better known as Korean Hospital) in Addis Ababa. After the operation, Facing African patients will be able to stay at the rehabilitation center «Cheshire», which is operated by Facing Africa. NOMA-HILFE- SCHWEIZ was able to visit some of PHE s patients in the hospital and the «Cheshire» home near Addis Ababa. Some of the patients at the rehabilitation center are happy to be among other children and to be able to make friendship with other people, who suffer from the same disease. For some patients it is not easy to live in their communities and being the only person with a facial disfigurement. Patients therefore not only receive medical care by a permanent UK doctor and local nurses, but also have the Possibility to exchange among his kind. Noma patient at Chesshire Tom Hoyles, the managing director of PHE and Biniyam Mekonen, the outreach officer of PHE accompanied the president of NOMA-HILFE-SCHWEIZ to the «Cheshire» home, where detailed information about the noma patients were received and interesting discussions held. Later on, Tom Hoyles introduced to NOMA-HILFE-SCHWEIZ a research project, which shall enable PHE to evaluate how many noma patients currently are in Ethiopia. The methology has been used by Dutch Noma Foundation in Sokoto, Nigeria (at the Noma Children Hospital Sokoto). Tom explained that PHE would base their study on cleft patients in the region of Harar and evaluates the cause and consequences of specific health conditions in Ethiopia. PHE will be able to gather an overall picture about cleft and noma diseases in Ethiopia. On the following day NOMA-HILFE-SCHWEIZ was invited to visit the Korean Hospital and an interesting exchange took place between Dr. Einar Eriksen, a plastic surgeon and NOMA-HILFE-SCHWEIZ. Also two patients, who have been operated already several times, have been visited, who very very thankful about their operation. Cheshire home of Facing Africa outside Addis Ababa

4 «Many patients have a speech problems. We have to ensure appropriate education possibility.» Biniyam Mekonen, outreach officer PHE Page 3/5 Visit to Harar and interaction with some noma patients NOMA-HILFE-SCHWEIZ visited the head office of PHE in Harar for two days. The introduction of the operation director Sebsibe Ayele was very warm. Sebsibe explained in short words their work in Harar, introduced the PHE team members consisting of five people, and showed some recent pictures of noma patients. Near Harar, Biniyam organised two visits of noma patients. First noma patient was visited in approx. 30km east of Harar in Babile. Leila Mumert is 22 years old and received noma when she was three years old. Only last year she was successfully operated. NOMA-HILFE-SCHWEIZ asked the mother of Leila, Savia Mumert, why she never went to a hospital or health center. Savia explained that she was afraid going to the hospital. The local district administrator, who previously was taught by PHE, convinced Savia and Leila to consult PHE as this organization could organize appropriate treatment. The second patients had a similar story. Just as Leila, also Neima Umer was discovered by the local district administrator and brought to Harar. Neima Umer lives in the district of Kersa, is 16 years old and very well integrated in her community. Neima and her mother are both very happy and thankful about the treatment of Neima. The local social and labour district administrator accompanied us to the village of Neima Umer. During the visit NOMA-HILFE-SCHWEIZ tried to find out, if the district administrator also informs the local community about health and hygiene issues. Biniyam explained that PHE did not concentrate on prevention or sensitization, but focused on outreach and finding noma patients. He mentioned that hopefully in the future, PHE will be able to organize more workshops and also focus on educating the general public. The social and labour administrator took the opportunity informed the community about the importance of mouth hygiene and proper nutrition. Some figures of PHE Neima Umer, one year after her operation During a short meeting the office of PHE, Biniyam and Sebsibe gave a short overview about the outreach work development of PHE in 2010 and Of course NOMA-HILFE-SCHWEIZ was very much interested in the statistics of noma cases during the mentioned period.

5 «This year we treated over 600 patients and did a follow up on 400 cleft and palate victims.» Biniyam Mekonen, outreach officer PHE Page 4/5 According to the 2010 statistics, PHE provided access to surgical treatment for 599 patients, whereof 577 were cleft, 10 noma and 12 other facial disfigurement patients. In 2011 (up to October), the treated patients amount to 630, whereof 600 were cleft, 16 noma and 14 other facial defect patients. Cleft patients compose the biggest part and make out approx. 96% of all patients. Noma patients increased in 2011 from 2% to 2.5%. Additionally PHE did a follow up in 2011 of 400 cleft patients. The follow up gave important information about the patients health situation and delivered information for improvements. Noma patient at the Korean hospital Noma patients at the Korea hospital NOMA-HILFE-SCHWEIZ unfortunately was not able to participate the workshop PHE organizes for local government officials, but has been informed that in July 2011 one workshop took place in the new zone around Bale. The zone consists of 20 districts. From each district a local district administrator and an expert was invited to the workshop. Two more workshops are planed for December. One in the region around Bale and one in Babile. In 2011 therefore a total of 3 workshops (awareness campaigns) are held. Sebsibe informed NOMA-HILFE-SCHWEIZ that during the upcoming Bale workshop not only official administrators are invited, but also local people from nearby villages, who are interested, will be able to participate. The workshop will be held in connection with a public health event. The meeting is expecting around 200 participants and provide a good possibility to raise an awareness about cleft and noma disease.

6 «The network of PHE allows to access the most remote areas around Harar.» Adeyinka Onabanjo, president of NOMA-HILFE-SCHWEIZ Page 5/5 Epilogue The visit of Project Harar was very short, but gave a general overview of the work done by PHE in Ethiopia. The possibility to participate on some of the workshops or other activities done by PHE was unfortunately not given and therefore only little can be said about the quality of the work. But NOMA-HILFE-SCHWEIZ had the chance to visit some of the noma patients in Addis Ababa (just after the surgical treatment) and in Harar (back in their villages) in order to get an impression of the patients condition. Biniyam Mekonen and Neima Umer in her village NOMA-HILFE-SCHWEIZ was very pleased to have found all patients happy about their treatment. Definitely the formation and education done by PHE for local health employees helped those patients to access the necessary treatment. The network of PHE helps enormously to access the most remote areas in Ethiopia. The close collaboration with the government is, according to Biniyam, very much appreciated. The aim of PHE to extend their network will help to access more remote areas, reach more patients with cleft or noma and provide a possibility to improve health conditions in Ethiopa. Most people treated by PHE are cleft patients and noma Leila and Savia Mumert in their home together with Savia s youngest daughter determine only a little part of their work as PHEs statistic shows. If noma patients are not found or if noma just does not exists in the same extend as in West Africa is not clear. PHEs intention to do a research in order to obtain reliable figures is therefore important and thereafter allows a systematic handling of the noma problem. As NOMA-HILFE-SCHWEIZ lays its focus on prevention, we hope that the PHE will use their network also to extend their prevention work and raise awareness among the general public so that the disease, especially noma, doesn t have a chance to raise.

7 so that children can smile again Thank you for your help and support In collaboration with: