EMPOWER FAMILIES TO MAKE INFORMED DECISIONS ABOUT SICKLE CELL DISEASE THROUGH GENETIC COUNSELING AND TESTING

SUMMARY:

Sickle cell disease (SCD) is a genetic disorder affecting millions worldwide, it causes chronic pain, recurring infections, organ damage, and reduced quality of life. LYDO aims to empower families affected by sickle cell disease (SCD) in Uganda, where approximately 1- 2% of newborns are affected and 13- 15% of the population carries the sickle cell trait. Despite its significant impact, SCD often remains misunderstood and under-resourced.

CHALLENGES:

1. • Limited access to genetic testing and counseling
2. • Inadequate healthcare infrastructure
3. • Lack of awareness and education
4. • Stigma and misconceptions
5. • Limited availability of effective treatments.
6. • Financial constraints.
7. • Inconsistent screening and prevention programs

SOLUTIONS:

1. • Genetic testing and counseling: Informed decision-making and family planning.
2. • Education and awareness: Community outreach, school programs, and public campaigns.
3. • Access to effective medications like hydroxyurea, pain management, and other treatments.
4. • Newborn screening: Universal screening to enable early intervention.
5. • Research funding: Advance understanding and treatment of SCD.
6. • Provide ongoing education and training.
7. • Specialized SCD clinics: Increase access to expert care.

LONG-TERM IMPACT:

1. • Improved health outcomes: Reduced complications, hospitalization, and mortality.
2. • Enhanced quality of life: Increased productivity, education, and social participation.
3. • Economic benefits: Reduced healthcare costs, increased workforce participation.
4. • Empowered communities: Increased awareness, education, and support.
5. • Reduced stigma: Greater understanding and acceptance.