An Open Letter to Dads Living With Hemophilia and Raising Daughters

Originally published on Hemophilia News Today by BioNews, Inc.

Dear Hemophilia Dad,

I am writing to you today to protect the health of your beloved daughter. Trust me, I know the struggles you encounter daily. In my mind, you are a superhero.

Your daughter is at risk for hemophilia, too. She is a carrier and needs testing to determine if her factor levels are low. A hematologist should be involved, preferably at the same hemophilia treatment center (HTC) where you receive your care.

According to the Hemophilia Federation of America, “Approximately one-third of women carrying the hemophilia gene experience bleeding symptoms. Carriers with clotting factors levels of less than 60% of normal may have symptoms similar to a male with mild hemophilia. They are often called symptomatic carriers or are diagnosed with mild hemophilia.”

At first, her symptoms may seem milder than yours — a bloody nose, excess bruising, or oozing from a wound. But remember, your daughter will eventually reach an age where she will bleed regularly each month. Trust me. She will not want to talk about menstruation with you. Ever.

As a 2021 article in HemAware notes, researchers have found evidence that joint bleeds occur in women with bleeding disorders, including hemophilia carriers with factor levels less than 60%. If your daughter has lingering joint injuries, your HTC can help.

If your daughter has hemophilia or is a carrier with low factor levels, a diagnosis could save her life. I regularly hear from women who didn’t expect to have problems, even though their father was a hemophiliac. Then the unexpected happens — an accident or a surgery where doctors can’t control the bleeding.

I encourage you to read my interview with Kim H., a symptomatic hemophilia carrier. Kim’s father had severe hemophilia A (factor VIII deficiency) and passed away after a brain aneurysm caused uncontrollable bleeding. Earlier this year, Kim had minor knee surgery. She developed painful compartment syndrome in her leg from uncontrolled bleeding. She lost 2.5 liters of blood and spent 32 days in the hospital. Kim has required more surgery and now relies on family members for help.

One day your daughter may wish to become pregnant. A successful pregnancy will hinge on her status as a carrier or hemophiliac. She may require treatment before delivery, and her child will need to be tested, too.

Increasing awareness of hemophilia in women begins with you. Your daughter needs you to take the critical step of having her checked by a hematologist at your HTC. Her life depends on it. Have questions? I am here for you. I am here for her.

With love, Jennifer Lynne