Not Just a Carrier
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I’m Not Just a Carrier — I’m a Patient.
A Belgian woman shares her journey to being heard as a hemophilia A carrier.
Not Just a Carrier
A Belgian woman shares her journey to being heard as a symptomatic hemophilia A carrier. At age four, a routine tonsil surgery led to unexpected bleeding and a much longer hospital stay than her sister’s. Doctors initially diagnosed her with Von Willebrand Disease. It was not until she was thirty, after she insisted on a thorough examination before undergoing eye surgery, that she finally received the correct diagnosis:
hemophilia A carrier
Her diagnosis revealed that she had inherited the condition from her father. While it was a relief to finally have a clear answer, that relief quickly gave way to frustration. As a woman, she found that her symptoms were often dismissed, and she wasn’t taken as seriously as male patients with hemophilia.
Now, she’s committed to improving care for the next generation. Her daughter, also a symptomatic Hemophilia A carrier, still lacks the proper guidance, she says.
“Carriers are also at risk of severe bleeding, and they deserve proper support.”
She still faces obstacles navigating the healthcare system. Without her former hematologist - who has since retired - she now personally ensures she receives the correct dosage of clotting factor before any medical procedure. “If I don’t ask for the medication, call the right people, make sure it’s done - it doesn’t happen. This responsibility shouldn’t be mine.”
The difference in care is clear when she compares her experience to her husband’s, who also has hemophilia A. “He gets a full check-up every year — joints, eyes, mental health. I’ve never been contacted like that.” Her message to healthcare professionals is simple: “Listen sincerely to me and take my knowledge as a patient seriously. I know my body, and I want to be part of the team because I have the most at stake.”
Listen sincerely to me and take my knowledge as a patient seriously. I know my body, and I want to be part of the team because I have the most at stake.”
Want to learn more about the experiences of women with bleeding disorders and their messages on how care can be improved in Europe? Explore their stories and resources:
Question: Can you recall an instance when you were taken less seriously than a colleague, peer, friend, or family member? What did you do to advocate for yourself?
Medical context
Hemophilia Carrier Status in Women
A woman with one X-chromosomal mutation in Factor VIII (8) or IX (9) is a carrier of hemophilia and can pass this on to her children. This may be inherited from a father with hemophilia (100% chance) or a mother who is a carrier (50% chance), but it can also result from a new mutation.
Even with one normal X chromosome, carriers can have low clotting levels and an increased bleeding tendency. This may cause easy bruising, heavy periods, or excessive bleeding during surgery or childbirth.
Early testing of clotting factors is important to assess bleeding risk in case of accidents, surgery, or delivery. During pregnancy, guidance from a multidisciplinary team is essential for carriers of hemophilia.
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