Project Overview
The Sickle cell disease project (SCD) is a 3 years project implemented by LVC and partners in collaboration with the Nansio District Hospital. Built on the foundation and achievements of the LVC Emergency medical fund, the project is designed to create community awareness about sickle cell and provide treatment and care to those affected by it.
People living in Ukerewe District have the highest prevalence of Sickle Cell genes in East Africa. Sickle cell accounts for 7% of overall deaths in children under 5 in sub-Saharan Africa. Roughly twenty percent of the Ukerewe population carry the gene. Sickle cell patients suffer from substantial pain, infections, anaemia and stroke.
Project purpose: To improve the care and decrease the suffering of people living with Sickle Cell Anaemia in Ukerewe District.
Research shows there are five simple things that can be done to have an immediate, significant effect on health outcomes of children living with sickle cell disease. Each patient usually needs 3-4 admissions to hospital per year to manage complications. With proper care their lives can be transformed using the following interventions:
- Newborn screening
- Infection prevention using penicillin
- Early use of hydroxyurea therapy
- Routine screening for end-organ damage
- Standardized treatment plans for acute complications
The aim of this project is to support the local health community to identify sickle cell patients, to develop a strong and robust delivery system that properly responds to sickle cell emergencies within the community
The long-term goal of this program is to implement and sustain all five interventions by building a strong foundation grounded in community engagement and education, along with clinical-education, treatment and care as well as research This will provide solid grounding for implementing and scaling up the five evidence-based interventions identified above.
All educational components of the project are developed by Tanzanian experts, using Tanzanian guidelines.
The startup phase of the project is supported by the Einhorn Family Foundation and Stiftelsen för Internationellt Onkologiskt Samarbete.
Objectives of the Project
- To Increase awareness and understanding of sickle cell disease in Ukerewe community
- To Improve the health infrastructure and support the health system in Ukerewe district to better identify and manage sickle cell complications
- To build the capacity of health professionals to provide high-quality SCD care by providing training through accredited programs;
- To develop and maintain relationships with stakeholders on a joint research agenda that is relevant, and appropriate and ensures best practices are adopted through evidence-based practices.
Clinical Education:
To enhance the capacity of health care workers, the SCD project has delivered clinical training to clinicians working in health centres on the Island. Training was based on Tanzanian guidelines for sickle cell care, and how to effectively implement the guidelines given the remoteness nature of the area and lack of resources. Trained clinicians will easily identify children brought sick to their centres if they had sickle cell symptoms .
Community education:
Lake Victoria Children (LVC) has a community ambassador program comprised of 70+ community volunteers who identify and work with vulnerable children and families in crisis. They have a strong track-record of community engagement and are best placed to initiate the engagement and education of the larger community. The SCD project has trained and educated all LVC village ambassadors on understanding of sickle cell and community engagement techniques. The ambassadors will in turn educate their wider community on SCD awareness, early identification and treatment arrangements.
Outpatient and inpatient hospital care: The purpose of this component is to diagnosis, provide care and treatment to those suffering and identified to have sickle cell, medications will be supplied for both outpatient and inpatient care. Treatment and care is coordinated and delivered by the trained Nansio Hospital Staff with technical support of a regular visiting hematologist from Bugando Regional referral hospital. A 24 hours operational SCD ward has been set up at Nansio Hospital to guarantee 24 hours response to SCD emergencies.
The Ukerewe Sickle Cell Disease Project partners :
Lake Victoria Children (LVC) is a locally registered Non Governmental organisation based on Ukerewe Island working at the grass-root to transform the lives of disadvantaged children and their families LVC has long and successful solid track-record of community engagement projects and is the host local organisation of the SCD project
Dr. Emmanuela Ambrose*, Bugando Hospital, Mwanza, pediatrician, paediatric haematologist and SCD specialist, who who has published extensively on SCD, including on sickle cell prevalence in Northern. Currently leading the Hydroxyurea Study and other research activities related to SCD.
Kaseza Lukumbuzya, Primary Custodian of Bukerebe;s Culture and Heritage, born on Ukerewe. Kaseza has many years experience working with United Nations in Transfer of Technology, Development Aid and Project Administration, including project financing and implementation. He is an advocate for island resilience, natural capital and holistic progress through health, education, water management, renewable energy, innovation, skills development.
Dr. Karin Euler, Associate Professor Queens University, Kingston and McMaster University, Hamilton, Ontario, family physician who has volunteered as a physician on Ukerewe for 14 years, leading several projects addressing oxygen shortage, cervical screening, menstrual hygiene, malnutrition and delivery services. She has been shadowing Dr Isaac Odame, a sickle cell specialist in Toronto.
Cathy Cleary, International Impact Facilitator, currently with Canadian and International organizations supporting projects in Ukerewe and the Democratic Republic of Congo with a focus on health, education, income generation, and women empowerment. Cathy is founder of the Tchukudu Women;s Training Centre and of BridgingPost.com. She has a master’s degree from Queen’s University in Public Administration.
Dr Mariam Claeson, MD MPH, Senior Advisor at Global Public Health Karolinska Institutet, with many years experience of maternal, newborn, child and adolescent health, with WHO, the World Bank and the Gates Foundation, and at primary health care level in Tanzania. Former Director for the Global Financing Facility for women and children.
Donor patners
Einhorn Family Foundation
Stiftelsen för Internationellt Onkologiskt Samarbete..