Hemophilia as it Impacts Women
Carriers and Women with Hemophilia
Although hemophilia is more prevalent in men, women can have it too. The earlier sections in this website that relate to understanding hemophilia, its causes, symptoms, diagnosis, treatment, and complications, all apply to women with hemophilia as well.
The National Hemophilia Foundation’s Victory for Women website also has useful information about symptoms, testing and diagnosis, and managing your bleeding disorder.
As a woman with hemophilia, of any severity, reach out and schedule an appointment to speak with providers at IHTC about any aspect of your care. We are here for you.
Humans are born with 46 chromosomes, half from their mother and half from their father. Females have two “X” chromosomes (XX) and males have a single “X” and a single “Y” chromosome (XY). X-linked disorders are associated with mutations on the X-chromosome. These disorders affect males more often than females because females have an additional X chromosome that acts as a “back-up.” Because males only have one X chromosome, any mutation in the factor VIII or IX gene will result in hemophilia. Females with a mutation on one X chromosome are called “carriers”.
If you are a woman and your father had hemophilia, you are always a carrier. This means each of your sons will have a 50% chance of having hemophilia and each of your daughters will have a 50% chance of carrying hemophilia.
The IHTC comprehensive care team has genetic counselors, psychologists, social workers, and a number of other professionals who will guide and support you in every stage of taking care of yourself as a carrier, as well as planning for a family through evaluating reproductive options, genetic testing, emotional support, and education. It is important for you to partner with the IHTC on getting education related to the amazing medical advances in the field of hemophilia, and also the responsibilities of being not only the daughter of a parent with hemophilia, the sister of someone with hemophilia, but also the parent, or future parent, of a child with hemophilia.
We invite you to stay connected to the multiple educational sessions at IHTC for carriers, and educational resources that are made available.
Approximately 30% of hemophilia carriers can have factor VIII or factor IX levels below the normal range.
Women with low factor levels may be at risk for heavy menstrual periods, bruising, and nosebleeds. They may also bleed more during surgery, after an injury or after delivering a baby. Treatment can minimize symptoms and prevent bleeding complications.
Schedule an appointment with a provider at the IHTC to discuss your bleeding symptoms, preventative measures for bleeding, and treatment options that would be suitable for your particular situation. We can also help educate your other medical providers about your bleeding risk.
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