Mavis Agnes Kisakye։ From Care Recipients to Self-Managers
Mavis Agnes Kisakye, Executive Director of Haemophilia Foundation of Uganda, shared a post on LinkedIn:
“Many children living with haemophilia grow up depending entirely on parents, guardians, or health workers to identify bleeds, administer treatment, remind them about medication schedules, and protect them from injuries.
While this support is important, it can sometimes limit confidence and independence when patients are not taught how to manage their own condition.
Imagine a university student who cannot travel alone because they do not know how to self-infuse clotting factors, or a young adult who misses work opportunities out of fear of experiencing a bleed far from home.
These realities highlight the urgent need to empower young people living with haemophilia to become self-managers rather than lifelong care receivers.”

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