Hemophilia Isn’t Just for Him

There was a time when we thought only males could inherit hemophilia, the bleeding disease caused by a lack of blood-clotting proteins. As it turns out, females can acquire or inherit bleeding disorders as well. Due to lack of awareness, clinicians may overlook these conditions in women causing delays in diagnosis and unnecessary suffering.

“Symptoms of bleeding disorders are often normalized or misattributed to other causes such as hormonal imbalances or ‘heavy periods,’” says certified registered nurse practitioner Jennifer Ngo, with the Hemophilia Treatment Center at Lehigh Valley Health Network (LVHN). “Without further investigation, this can affect quality of life and even lead to complications such as anemia, risk for miscarriage and joint and muscle damage.”

“Other conditions – endometriosis or fibroids, for example – can also mask the presence of a bleeding disorder,” she says.

Sometimes, a medicine or an illness can cause your body to stop making blood-clotting proteins or the clotting process stops working properly. An issue with the blood vessels can also lead to abnormal bleeding. In these cases, the disorder is acquired. Under this heading, you’ll find conditions such as disseminated intravascular coagulation, liver disease-associated bleeding and vitamin K deficiency bleeding.

Inherited bleeding disorders include three types of hemophilia (the type depends on which clotting factor is missing), hereditary hemorrhagic telangiectasia and von Willebrand disease.

“Von Willebrand disease is the most common inherited bleeding disorder and is easily missed,” Ngo says. “Symptoms can be mistaken as normal or not severe enough to raise concern. Many women are misdiagnosed with ‘anemia due to heavy periods’ without investigating an underlying bleeding disorder.”

Ngo and the staff at the Hemophilia Treatment Center are committed to raising awareness about bleeding disorders in women. They are spreading the word about this year’s theme for World Hemophilia Day, April 17, 2025, which is "Access for All: Women and Girls Bleed Too."

Ngo says a good place to start is to help clinicians recognize the symptoms of bleeding disorders in women. These might be:

• Heavy or prolonged periods (lasting more than seven days or soaking through pads/tampons every 1-2 hours)
• Excessive bleeding after surgery, childbirth, dental work or minor injuries
• Frequent nose bleeds lasting greater than 10 minutes
• Easy or unexplained bruising
• Family history of bleeding disorders

She says if female patients have any of the above symptoms, the clinician (usually a primary care physician or gynecologist) can start with screening labs, then test for von Willebrand factor levels and activity, platelet function and specific clotting factor levels. Patients can be referred to the Hemophilia Treatment Center for further workup/evaluation.

The Lehigh Valley is fortunate to have a specialized health care facility able to provide comprehensive care for children and adults – male and female – with bleeding disorders. Specialists at the Hemophilia Treatment Center diagnose and manage bleeding disorders in women, including heavy menstrual bleeding, postpartum hemorrhage and bleeding complications during and after pregnancy.

“Studies have shown that patients who receive care at hemophilia treatment centers have better health outcomes including fewer hospitalizations, lower health care costs and reduced bleeding related complications,” Ngo says. “Our center emphasizes holistic, lifelong care for individuals with bleeding disorders, empowering them to manage their condition effectively to live a normal life.”