On 5th October, 2024 the Catherine Phil Sickle Cell Support Initiative in partnership with Lira Elite Club, will host a massive Sickle Cell Charity Run in Lira City, the first of its kind the capital of Lango sub region.
Over 2,000 participants from corporate companies, cultural institutions, health workers, students from schools, colleges and universities and well wishers from the entire region, among others are expected to join the lifesaving event.
Renowned Sickle Cell advocate Ray Odur, the chief organizer, known for his tireless efforts to eliminate the disease in Lango says the event aims to raise awareness, funds, and support for sickle cell patients in the region.
The event which comes four days before Uganda celebrates its 62nd independence anniversary promises to be a game-changer for sickle cell patients in the sub region.
Ray Odur, who serves as Executive Director with the Catherine Phil Sickle Cell Support Initiative says at least 1,000 patients will receive hydroxyurea, a crucial medication for managing the disease and that participants will receive basic knowledge on sickle cell.
He has met a number of stakeholders like Bishop Prof. Alfred Olwa of the Diocese of Lango and Bishop Sanctus Lino Wanok of Lira Diocese, leaders from Lango Cultural Institution (Tekwaro Lango under Won Nyaci-elect Eng Dr Michael Moses Odongo Okune) and health officials, among others who have expressed support to the noble cause.
“…patients will be counseled and provided with medication while participants will be tested for the disease, so I invite everyone to join the fight against sickle Cell disease…” Ray Odur made the appeal in an interview.
The run also aims to raise funds for the purchase of two HB electrophoresis machines, essential for diagnosing and managing Sickle Cell disease.
Sickle Cell Disease (SCD) is a genetic disorder affecting hemoglobin production, causing red blood cells to misshapen and break down, leading to various complications.
Globally, more 300,000 babies are born annually with the disease.75% of SCD births occur in sub Saharan Africa.50% of affected children die before the age of 5 due to lack of access to health care.
Sub Saharan Africa has the highest prevalence of SCD globally and Nigeria, Democratic Republic of Congo and Tanzania have the highest number of SCD cases.
Data available indicates that limited access to health care, diagnosis, and treatment exacerbate the problem.
In Uganda it’s estimated that 25,000-30,000 children are born with SCD annually, and limited awareness, diagnosis, treatment options and high mortality among the children stand high as major challenges.
According to a recent study conducted by the Ministry of Health, 23.2% of Ugandans carry the Sickle Cell trait, with the highest prevalence found in the north, Central and mid north regions.
Only 0.73% of the population has Sickle Cell Disease. Despite being a leading cause of childhood mortality, experts say Sickle Cell anemia can be effectively managed through measures such as newborn screening, penicillin prophylaxis, and comprehensive care, which have been shown to reduce early deaths by 70%.
Tragically, 80% of children with Sickle Cell disease do not live to celebrate their 5th birthday, with Northern Uganda having the highest prevalence of the sickle cell trait in the country.
According to a 2016 research by some experts, Alebtong district in Lango stands out with the highest prevalence of the sickle cell trait in the country, something that should concern every leader in the sub region.
The World Health Organization (WHO) has developed guidelines for SCD diagnosis, treatment and management. The world health body also continues to support research and development of new treatments.
WHO also collaborates with governments to improve access to health care and screening programmes.
A few years ago, WHO launched the Sickle Cell Disease: A Strategy for the WHO African Region to address how to tackle the disease.
WHO recommends newborn screening for SCD, early diagnosis and treatment, increased access to hydroxyurea and other medications, improved health care infrastructure and training for healthcare workers as well as public awareness and education campaigns.
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