Published 11 April 2019 | 3 min read
This year’s WHD focuses on ‘reaching out’ and aims to raise awareness and connect the 400,000+ strong community of people living with haemophilia around the world.
We feel strongly that reaching out and identifying new members of the haemophilia community, accurate diagnosis and access to treatment are fundamental parts of improving life with haemophilia, and we are committed to supporting this initiative.
Spotting the signs and getting an accurate diagnosis of haemophilia is crucial, as diagnosis can arise from a variety of situations. For example, when Olivia found out that her son Harry had haemophilia she simultaneously found out that she was a carrier:
“Harry was diagnosed with severe haemophilia B at birth with a heel prick test. At the same time, I found out I was a carrier for haemophilia B.”
For Olivia, knowing when her son Harry might need care is a constant consideration. Olivia recognises that for herself and Harry, as for many people living with haemophilia, the effects that others don’t see can sometimes be the most painful.
“The major pain isn’t what you can see; the bleeding inside hurts more than any bleeding outside.”
The physical pain of haemophilia can be a major problem. For Heinz, joint damage and a loss of mobility became his major concern after years of living with haemophilia. He recalls from his childhood:
“I was in and out of hospital, missing long periods of school and excluded from social activities as a child.”
Since Heinz’s diagnosis at 14 months, treatment and care have improved. Heinz knows that now it is all about spotting ways to improve living with haemophilia.
Brian endured a long journey to reach his diagnosis and prophylactic treatment. However, Brian recognises that the extensive route to his current treatment helped him to identify ways to improve living with haemophilia:
“Now that I am on prophylactic treatment I’ve learned that there’s a lot of other risks that could have hurt me during the time.”
World Haemophilia Day is important for so many reasons, not least the ability to globally raise awareness, encourage diagnosis and educate on spotting the signs. We are proud and committed to supporting this landmark day!
Please show your support by spreading the message using #WorldHaemophiliaDay.
To learn more about this condition and see our full patient stories, please visit the Changing Haemophilia® site