Hemophilia takes a toll not just on the life of the individual who struggles with the disease, but also on the family unit. It is not easy to have a genetic disorder as a life focal point that does not go away. When a woman has hemophilia, it can be stressful on her spouse and on her children. Often, moms are the caregiver, and when the caregiver is a patient, it presents challenges.
Sometimes, hemophilia is an invisible disability with subtle symptoms. My partner in a previous relationship did not believe me when I was experiencing bleeds. Doctors were just coming around to the knowledge that women have hemophilia. When I injured myself, I would ask whether I needed factor VIII. The response I often received was, “You are a hypochondriac, just like your father; you do not need factor, you are fine.” First, my father was a hemophiliac, too. Second, I was, in fact, bleeding and did need factor VIII infusions. I went without medical care. I was feeling judgment from my significant other and from doctors who doubted my bleeding issues and my personal pain. At the time, I didn’t have enough information to self-advocate for treatment. If only the family support had been there to encourage me to fight for care. It was years before I got it.
One of the things that touches me when I attend hemophilia conferences is family involvement. This is something I continue to yearn and hope for in my own life. It is beautiful when families unite to fight a disease that significantly impacts their lives. This participation creates stronger bonds and ties, which show both in a couple’s personal relationship and in their relationship with the greater hemophilia community. Gaining knowledge, educating others, and creating ties with a larger support network is critical.
From what I’ve observed, if a woman is the only person in her family to have hemophilia, sometimes the families are less involved. When a child or husband or father is affected, it seems to me there is more family participation. I would argue the critical need for family involvement in the larger community if any member is affected. The shared personal experience of gaining health information, understanding advocacy, and making connections strengthens a family unit.
One important component of many hemophilia conferences is a focus group for spouses and partners. This gives spouses a safe space of their own to share the struggles, concerns, frustrations, and fears that come from living with a person who has hemophilia. The support network allows the spouse to have their emotional needs met and helps everyone understand how they fit into the rare disease community. Spouses support their significant other with hemophilia, and they need support, too!
Support changes everything
A few years ago, I met someone who has steadily encouraged me to seek treatment and support for hemophilia. The difference between that relationship and my former experience has had a great impact on me. Now, instead of being told I am a hypochondriac, I am encouraged to infuse factor VIII. As a result, I infuse more often and am healthier. My injuries heal faster, and I am getting the care I need. I am also active in the hemophilia community, attending conferences, doing volunteer work, and writing this column! My involvement has introduced me to hematologists who are sensitive to women with hemophilia, and my treatment plans are improving. I am so thankful to be afforded the opportunity to continue to find my voice. I am able to advocate for my own treatment and the proper diagnosis and treatment of all women with hemophilia.
You are worth it!
If you are a woman with hemophilia (or are a symptomatic carrier of hemophilia), know that you deserve the support of your spouse and proper diagnosis and treatment! Remember, we are taught to put our own oxygen masks on before we help those traveling with us. In hemophilia terms, we need to stop and treat our own bleeds and assure we have proper care before we care for those around us. Our families love and need us. If we want to live long, healthy lives for them, we must prioritize our own care and treatment. You are worth the attention.
If you aren’t getting proper care or support, talk to your local hemophilia treatment center (HTC). No woman should have to suffer alone. If your HTC does not have experience with treating women, find one with a gynecologist who collaborates with the team to create treatment plans. Some women go to multiple HTCs before they find professionals who understand how to treat women with hemophilia. It is worth it, since support on every level does indeed change everything.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.