Hemophilia management takes a toll on patients, yes, but also families

My bleeding disorders, hemophilia B and von Willebrand disease, have significantly affected my family.

As I’ve aged, my appreciation for my family has grown tremendously. I’ve come to realize that hemophilia‘s impact isn’t just limited to me; it’s also affected my family in profound ways. True, patients get hit with the physical toll of hemophilia, which is well documented. But in several other respects, bleeding disorders also take a toll on entire families.

Psychological and emotional stress

Parents of children with hemophilia often worry about their health and well-being, particularly if the children experience frequent bleeding episodes or have a severe form of the condition. Their parents might also experience feelings of worry or guilt that they’ve passed on the condition.

One of the most challenging aspects of hemophilia is the risk of bleeding episodes, which can be spontaneous and unpredictable. Bleeding can occur internally, in joints, muscles, or organs, or externally, from cuts or wounds. Further, girls with the disorder may have especially heavy menstrual bleeding. These bleeding episodes can be painful and debilitating, leading to long-term complications.

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As a result, families need to be vigilant and prepared to respond, which can be particularly challenging when young children are the patients. Parents may need to monitor their child’s activities and restrict certain types of play or sports to reduce the risk of injury. They may also need to be prepared to administer emergency treatment, such as factor replacement therapy, to stop bleeding episodes as quickly as possible.

When I was a child, my parents often argued about whether a bleed was actually a bleed. In the 1970s, we lived in a bubble. Hemophilia didn’t run in my family. My parents were given little guidance on what a bleed looked like. I often had a needle inserted into my knee, for example, to drain blood and reduce swelling. That was considered my “normal,” and to my knowledge, further treatment for bleeding was never considered.

That blows my mind today.

Financial stress

The cost of treatments, such as factor replacement therapy or gene therapy, can be exorbitant. Hemgenix (etranacogene dezaparvovec), for example, a one-time gene therapy for hemophilia B recently approved by the U.S. Food and Drug Administration, has been called the world’s most expensive drug. In such cases, insurance coverage may offer limited help. The need for frequent doctor visits, lab tests, and hospitalizations can also add up quickly.

These financial pressures can lead to stress and anxiety, especially for families who struggle to make ends meet.

Changes to routines and social lives

Families may need to make significant changes to their daily routines and activities to accommodate a child or family member with hemophilia. These may include avoiding contact sports or other activities that could cause injury, or modifying a home to make it more accessible and safe for someone with mobility issues. Managing the disorder can also require family members to miss school or work because of bleeding episodes or hospitalizations.

Children with bleeding disorders may have to limit social interactions with peers or other activities they enjoy. I gave up track and dance, for instance, and offered little explanation to my teammates other than saying I had a bad knee. We never discussed my bleeding problems outside of my immediate family. Missing or leaving school because of a bleed was embarrassing; I wanted to fit in, and my parents wanted that for me, too.

Family dynamics

Parents of children with hemophilia may have to take on heavy caregiving responsibilities, which can take time away from other family members. That can be particularly challenging for single-parent households or families with other young children.

In my family’s case, my sisters were not afflicted with my bleeding disorders, and they’d assume I was seeking attention from my parents when I faced a health problem. As for me, I remember being upset when my mom couldn’t visit me in the hospital when I spent over a week there having knee surgery. My overly dramatic teenage mind never comprehended that my parents had two other children at home who needed attention, too.

Nowadays, support groups and advocacy organizations can provide a sense of community and resources for families living with hemophilia. Advances in treating and managing hemophilia have also given families hope for a better future, with improved quality of life and reduced risk of complications.

Let’s raise a toast to the often unacknowledged heroes in the hemophilia community: the family members and caregivers.

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.