Ujol K.C.—Vice President (Program) of the Nepal Hemophilia Society—talked to the World Federation of Hemophilia (WFH) about the importance, rewards and challenges of conducting outreach and identification campaigns to find and support people who have a bleeding disorder, but who are not getting a proper level of care for their condition.
How long have you lived with a bleeding disorder and what type?
I am parent of a person with hemophilia (PWH). My son name is Shreejal K.C. He is 19 years old. He was diagnosed with factor IX deficiency when he was seven years old.
How are you currently involved with the bleeding disorder community?
I am involved as the Vice President (Program) of the Nepal Hemophilia Society.
How long have you been involved with the bleeding disorder community?
I have been involved with the bleeding disorder community since 2007. I was part of the Nepal Hemophilia Society for two terms as Board Member, one term as Secretary, one term as General Secretary and now as Vice President (Program).
What motivated you to work with the bleeding disorder community?
When my son was diagnosed with hemophilia, I saw many people with hemophilia suffering due to lack of treatment. I thought I could help these people and it motivates me to be a part of the bleeding disorders community and help give my son proper care.
Why do you think outreach is important?
I think outreach is important because it is the first step in treatment—and it’s essential for improving care. Without diagnosis, people cannot receive the treatment they need, and without an accurate number of the people affected, governments are much less likely to provide funding for treatment. Outreach is a key opportunity to help newly diagnosed patients learn more about their bleeding disorder and maintain their health.