Title : The burden of sickle cell in Uganda
Abstract:
In Uganda, a plethora of a health priorities heavily weighted by infectious/communicable diseases which take precedence in resource allocation have left non-communicable diseases such as sickle cell anaemia largely under-studied. The sickle cell trait burden in the country was reported at 13% nearly 7 years ago [1] and continues to grow in an environment where geographical differences in burden have been observed. Progressively however, interest in addressing this congenital non-infectious, silent killer of children has been realized through advocacy and political will at the Ministry of Health. Several support programs including new born screening targeting children at birth and those below 2-years of age have been rolled out. Sickle cell clinics have been established in high burden districts with health workers’ training on disease manifestation and management. Resources have been invested in raising awareness and sensitization including pre-marital screening and encouraging youth engagement. Several partnerships have been established in collaboration with the national health laboratory to establish the reach of sickle cell anaemia and curtail the spread of the trait.
Efforts to address the disease notwithstanding, several challenges in the management of the sickle cell anaemia and living with the disease heavily weigh on sufferers, parents and caretakers. This presentation will shed light on the intricacies on raising a child with sickle cell disease, the impact on the family, marriage, finances and social aspects. How these experiences have been used to serve the community, the establishment and growth of a patient/community focused organisation, using social media platforms to create support for families. This talk will also delve into the toll of sickle cell disease on the body, failure to respond to conventional therapies such as hydroxyurea, the choice of embarking on alternatives such as bone marrow transplant and experience as a donor of the stem cells, the impact of the procedure, challenges of the half match transplant and recovery.
Research in sickle cell anaemia and clinical preparedness for new technologies and cutting edge treatments like gene therapy are also underway in partnership with several stakeholders.
Audience Takeaway:
- Outputs from Partner and Government engagement in the sickle cell campaign.
- The audience will appreciate Uganda’s efforts on the New Born Screening program and opportunities for collaboration driven by as availability of a sample bio-bank at the national repository.
- The audience will learn about efforts to contain sickle cell anaemia in low income countries like Uganda, efforts invested in in sickle cell research and management.
- Depending on interest, more will be shared about the sickle cell disease which is the most lethal genetic disorder and they will learn more about it and its challenges and what can be done to support those living with sickle cell disease in both high income countries and low income countries.
- Research/survey especially about the burden of sickle will be shared and yes, it can be used.
Other benefits:
- Many will pick interest in what Uganda is doing in the sickle cell field and would like to be part.
- New collaborations and partnerships will be formed.
