How we can manage sickle cell disease

What you need to know:

  • The issue: Sickle cell
  • Our view: There must be concerted and deliberate efforts to assist and empower people living with sickle cell disease.

June 19, the World Sickle Cell Awareness Day, serves as a powerful reminder of the global impact of sickle cell disease (SCD) and the urgent need for increased awareness, support, and advocacy.

This observance provides an invaluable opportunity to bring together communities, health care professionals, policy makers, and individuals living with SCD to address the challenges faced by those affected by this debilitating condition. SCD, a genetic blood disorder, affects millions of people worldwide. In Uganda, it is reported that around 20,000 children are born with sickle cell anaemia every year.

Education and awareness lie at the core of combatting SCD. On World Sickle Cell Day, we must intensify efforts to educate communities about the disease, its prevalence, and the challenges faced by individuals and families living with SCD. By dispelling myths, breaking down stigma, and promoting accurate information, we can foster greater understanding and empathy. Schools, health care institutions, and community organisations should collaborate to implement comprehensive awareness programmes, empowering individuals to recognise the signs and symptoms, seek early diagnosis, and provide appropriate support.

Living with SCD presents a lifelong battle against chronic pain, anemia, organ damage, and a range of complications. On this World Sickle Cell Day, we must strive to empower sickle cell patients by providing them with the tools, resources, and support they need to navigate their journey effectively.

Our government should prioritise access to specialised care, including regular health check-ups, disease management programmes, and mental health support. It is vital to create a patient-centred approach that promotes self-advocacy, enhances quality of life, and fosters resilience among individuals with SCD.

This day provides a platform to advocate for such policy changes that address the unique needs of individuals living with SCD. Importantly, it is crucial to advocate for comprehensive newborn screening programmes, genetic counselling, and public health initiatives aimed at preventing SCD-related complications. By amplifying the voices of those affected by SCD, we can drive meaningful policy reforms and effect lasting change.

Let us increase awareness, empower sickle cell patients, invest in research, and advocate for policy change to create a more inclusive and supportive society for individuals with SCD. On this World Sickle Cell Day, let us stand together, inspired by the resilience and strength of sickle cell patients worldwide.

Together, we can raise our voices, drive change, and ensure that every individual living with SCD receives the care, support, and opportunities they deserve. By working collaboratively, we can create a future where sickle cell disease is no longer a barrier but a condition that is understood, supported, and ultimately conquered.