An Open Letter to Dads Living With Hemophilia and Raising Daughters
Increasing awareness of hemophilia in women starts with you
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.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
Hi! I thought the daughter of a man with hemophilia will
always be a carrier. We have hemophilia B in our family. Could you look into this for me? I was about to send your article to my oilsHem B son concerning his daughter.
Hi Rosemary! Thank you for your comment. You are correct - the daughter of a man with hemophilia is a carrier. The concern is identifying the daughter's bleeding problems and providing treatment. Decades ago, it was thought that even with a low factor level, a woman would be okay, but now we realize that isn't the case for most women. I despise the word "carrier" - it minimizes the problems.
From this website: https://www.hog.org/handbook/article/2/12/what-is-carrier-testing-and-who-should-be-tested
Some women do not have to be tested to know they are carriers. These women are carriers:
daughters of men with hemophilia
mothers who have more than one child with hemophilia
mothers who have a child with hemophilia and another relative with hemophilia
Thank you for the correction. I am a symptomatic carrier myself.