Treatment for haemophilia A has changed enormously.
Regular factor VIII replacement therapy, extended half-life factor products and newer non-factor treatments such as emicizumab can help prevent bleeding and allow many people with haemophilia A to live more active lives.
But preventive treatment or prophylaxis does not necessarily mean that every bleeding episode disappears.
A 2026 real-world study of people with moderate-to-severe haemophilia A found that breakthrough bleeding continued to occur across different prophylactic treatment groups. Researchers also found that pain, fatigue and restrictions on everyday activities could continue to affect quality of life.
That can be frustrating.
You may be following your treatment correctly and still experience a painful joint, unexplained swelling or another breakthrough bleed.
And after years of being told to watch carefully for bleeding, it may not always be easy to know when a new pain is actually a bleed, an old joint problem or something completely unrelated.
With haemophilia treatment evolving rapidly, including extended half-life factor VIII, non-factor therapies and gene therapy, expectations around what good bleed control should look like are also changing.
💬 We'd really like to hear from people living with haemophilia A:
Do you still experience breakthrough bleeds while on prophylactic treatment?
Can you usually recognise when joint pain is caused by a bleed?
Has changing haemophilia treatment reduced how often you bleed?
When choosing treatment, what matters most to you: fewer bleeds, fewer injections, convenience, feeling safer, or something else?
@Gayflecreeshay7606@Cleestucoos67@Coadrun26
Treatment statistics tell one part of the story, but everyday life between treatments matters too.
How close has your current treatment brought you to living without worrying about the next bleed?
Razar.M
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Razar.M
Community manager
Last activity on 29/10/2026 at 15:42
Joined in 2026
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Hi everyone 💙
Treatment for haemophilia A has changed enormously.
Regular factor VIII replacement therapy, extended half-life factor products and newer non-factor treatments such as emicizumab can help prevent bleeding and allow many people with haemophilia A to live more active lives.
But preventive treatment or prophylaxis does not necessarily mean that every bleeding episode disappears.
A 2026 real-world study of people with moderate-to-severe haemophilia A found that breakthrough bleeding continued to occur across different prophylactic treatment groups. Researchers also found that pain, fatigue and restrictions on everyday activities could continue to affect quality of life.
That can be frustrating.
You may be following your treatment correctly and still experience a painful joint, unexplained swelling or another breakthrough bleed.
And after years of being told to watch carefully for bleeding, it may not always be easy to know when a new pain is actually a bleed, an old joint problem or something completely unrelated.
With haemophilia treatment evolving rapidly, including extended half-life factor VIII, non-factor therapies and gene therapy, expectations around what good bleed control should look like are also changing.
💬 We'd really like to hear from people living with haemophilia A:
@Gayflecreeshay7606 @Cleestucoos67 @Coadrun26
Treatment statistics tell one part of the story, but everyday life between treatments matters too.
How close has your current treatment brought you to living without worrying about the next bleed?
With care,
Razar from the Carenity team 💖