Haemophilia A to Z
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“Every time, when he was a little child, and he fell, we had to go to the hospital. Between his first birthday and about his sixth birthday we had to go daily.”
Haemophilia can be a significant burden on people with the condition and their caregivers. One of the greatest challenges for someone with haemophilia A is balancing their condition with daily life.
People living with haemophilia A either lack, or do not have enough of, a clotting protein called factor VIII. This means that their blood does not clot properly, which can lead to uncontrolled bleeding.
people worldwide are affected by haemophilia A. There are many misconceptions about this rare bleeding disorder.
Having haemophilia means coming to terms with restrictions caused by the condition, many of which are linked to physical activity, such as contact sports.
“I try to do what I can and don’t linger too much on what I cannot do. And that’s for me a sort of motto in life.”
Not all bleeding is caused by external injuries. Some people experience spontaneous bleeding into joints, which can be extremely painful and result in long-term damage.
“We could compare our damaged joints with the state of the joints of someone who is 70 or 80 years old.”
Although there has been progress in the treatment of haemophilia A, clinical challenges remain.
People with haemophilia A usually need to administer their treatment every few days – or as often as every day for those who have developed inhibitors. Finding a vein for treatment infusions can be difficult, especially in children.Learn more
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people with severe haemophilia A develop inhibitors, or antibodies, which recognise the factor VIII as foreign and stop it from working.
People with haemophilia A are in need of new treatment options that reduce the number and severity of bleeds, address the problem of inhibitor development and offer a more convenient administration.
At Roche, we see our growing relationship with this community as a partnership to hopefully change the way people with haemophilia A can live their lives.
At the moment, prophylaxis offers protection from bleeds, but there are still peaks and troughs in that protection.
“Ultimately, people with haemophilia A should be able to feel that they are protected beyond the minimal amount, and that this protection is sustained so they can live each day free from anxiety over their risk of bleeding.”Learn more