Today people around the world join together to mark World Hemophilia Day. This is an opportunity for the community to connect locally and globally and take action. This year’s World Hemophilia Day focuses on reaching out to young people and encouraging the community to “Speak out. Create change.”
What is Hemophilia?
Clotting factor is a protein in the blood which controls bleeding. People with hemophilia do not have enough clotting factor in their blood to control bleeding, meaning that they may bleed excessively even from minor injuries. In people with moderate or severe hemophilia, bleeding into muscles and joints can also occur, causing sever pain. Hemophilia is quite rare with approximately only 1 in 10,000 people born with it.
Women with Hemophilia
Hemophilia is usually passed on to a child through a parent’s genes. Whether or not a child inherits the mutated gene responsible for hemophilia and becomes either a carrier of the gene or develops the condition, depends on whether it is the mother, father or both who carry the gene and whether the child is male or female. Find out more about the way hemophilia is passed on here. In the past it was believed that, although both men and women could be carriers for hemophilia, only men could have symptoms of the condition. However, newer research suggests that women can also experience symptoms.
Diagnosis and Treatment
Many people with a family history of hemophilia ensure their children get tested soon after birth. However, approximately one third of babies diagnosed have no other family members with the disorder and doctors may check for hemophilia if a new born is showing certain signs. To make a diagnosis, doctors conduct a range of screening and clotting factor tests. Treatment for hemophilia centers on replacing the missing blood clotting factor to enable the blood to clot and prevent uncontrolled bleeding by administering medicine.
Labor and delivery
The World Federation of Hemophilia explains that it’s hard to measure clotting factor levels during labor, so this should be done in the last trimester of pregnancy. If factor levels are low, treatment may be given during labor to reduce the risk of excessive bleeding during and after childbirth. Clotting factor levels may also determine whether a woman can receive local anesthesia (an epidural). There is an increased risk of head bleeding in affected male babies, especially if the labor and delivery have been prolonged or complicated.
After delivery, a carrier’s circulating clotting factor goes back down to her pre-pregnancy level and the chance of bleeding is at its highest. Certain precautions can be taken to reduce the risk of postpartum hemorrhage: medications that keep the womb contracted can be given, and the placenta should be delivered by controlled traction of the umbilical cord.
The World Federation of Hemophilia
World Hemophilia Day is coordinated by the World Federation of Hemophilia (WFH). For 50 years, the World Federation of Hemophilia (WFH), an international not-for-profit organization, has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 122 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.