Derick Rugenga: Every Person Living with Haemophilia Deserves to Live Without Fear
Derick Rugenga, Haemophilia Nurse at Kitete Regional Referral Hospital, shared on LinkedIn:
”Last month, during World Hemophilia Day, I reflected deeply on the realities faced by people living with Hemophilia and other bleeding disorders.
As a healthcare professional, I have witnessed the challenges many patients continue to face – delayed emergency care, limited community awareness, stigma, and difficulty accessing essential treatment, especially Factor IX medication for patients with Hemophilia B.
One of the most painful experiences has been encountering children who stopped attending school because of fear of injuries, bleeding episodes, or being misunderstood by others.
No child should lose their education or confidence because of a medical condition.
Despite ongoing efforts to improve care and support, many families still struggle to access timely diagnosis, treatment, and specialized services especially in rural areas .
Awareness in schools and communities remains limited, and many people continue to suffer silently.
This reminded me that advocacy must continue beyond awareness days.
We need:
- Better access to emergency care and clotting factor treatment
- Increased awareness in schools and communities
- Stronger support systems for patients and caregivers
- Inclusion and protection for children living with haemophilia
- Continued investment in healthcare services for rare bleeding disorders
Every person living with haemophilia deserves dignity, timely care, education, and the opportunity to live without fear.”
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