The impact of haemophilia on women and girls continues to be underestimated and even unrecognised.
The Haemophilia Society’s Talking Red campaign is working to raise awareness of how women are affected by bleeding disorders including haemophilia - https://haemophilia.org.uk/support/ta...
Haemnet’s Cinderella Study is investigating the unmet needs of women and girls with bleeding disorders. Among the large number of participants who carry the haemophilia gene, many experience bleeding symptoms. These women have hemophilia just like their male family members.
Haemophilia is caused by a deficiency of factor VIII (haemophilia A) or factor IX (haemophilia B), which affects the blood’s ability to clot. There are severe, moderate and mild forms of the condition which affect the people who have it in different ways. Symptoms can include easy bruising, and prolonged bleeding as a result of trauma, surgery or dental work; spontaneous bleeding into joints and muscles occurs mainly in moderate and severe haemophilia.
Haemophilia is not the most common inherited bleeding disorder, but it is the one that most people have heard of. There is no cure, but there are treatments that can help to prevent or treat bleeding symptoms. And there is a commonly held belief that it only affects men – but this is not true.
The inheritance pattern of haemophilia means that all daughters of men who have haemophilia will carry the haemophilia gene. If a woman has the haemophilia gene, there is a 50/50 chance that her sons will have haemophilia and a 50/50 chance that her daughters will be ‘carriers’. There are more women with the haemophilia gene than there are men with haemophilia. But whereas boys born to women known to carry the haemophilia gene are usually diagnosed at birth, girls tend not to be genetically tested to confirm whether they also have the haemophilia gene until they are around 16 – and the impact of this goes beyond being ‘just a carrier’.
Women who have the haemophilia gene can have low levels of factor VIII or factor IX. They can experience bleeding symptoms, including easy bruising, bleeding after surgery or dental work, and those with factor levels indicating moderate or severe haemophilia can experience joint and muscle bleeds. In addition to the bleeding symptoms experienced by men with haemophilia, around 50% of women with the haemophilia gene have heavy periods, which for many can be debilitating. They may also experience prolonged bleeding after childbirth. However, there are treatments that can help. These include:
• Tranexamic acid, an anti-fibrinolytic agent, usually taken in tablet form, that slows the breakdown of blood clots and is effective in treating heavy periods and other mucosal bleeding (e.g. gum bleeding, nose bleeds)
• Desmopressin (DDAVP), which can be used in mild or moderate haemophilia A, or in those who carry the haemophilia A gene, to help lessen bleeding
• Factor VIII (haemophilia A) or factor IX (haemophilia B) concentrates, which can be used to treat joint bleeds or to minimise bleeding during surgery.
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