A survey of haemophilia patients in the UK has found that 70% feel they have to avoid physical activities to avoid another bleed.
The "My Life With Haemophilia" study surveyed 74 patients and was reported at the World Federation of Haemophilia congress, taking place in Glasgow, UK, this week.
It was overseen by the Haemophilia Society.
The survey found that 93% of respondents felt that haemophilia impacts their daily life - and 50% wished they were informed enough to take a more active role in their treatment and care.
The vast majority (80%) would like to see a greater understanding and wider discussion of haemophilia within the community, particularly in relation to educating friends, family and colleagues about their condition.
Jefferson Courtney of the Haemophilia Society stated: "As our world experts meet to consider solutions for addressing the greatest needs in haemophilia, it is important to remember the people actually affected by this condition.
"By understanding more about the challenges they face, and their unique experiences of living with haemophilia, we as a community, and they as health experts, can begin to provide the solutions they need in order to continue to live healthy and productive lives."
The results of the survey were published on Monday (22 May), during the World Federation of Haemophilia congress, taking place in Glasgow, UK, this week.
Source: Haemophilia Society
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