Carrier moms — those whose sons or daughters have hemophilia — inspire me. I see you struggle, sometimes daily, with the realities of parenting a child who has a chronic condition. Your tireless dedication necessary to ensure a child’s safety and proper medical treatment can be challenging and emotionally draining. Often, you give so much to your child that you have nothing left for yourself.
You are worth it. You deserve to take care of yourself and your child needs you to be healthy. Taking care of your child means taking care of yourself so you can be the best parent possible.
The dangers of comparison
Recently, a mom said to me, “I don’t need treatment. My pain is nothing like my son‘s pain.” I hear statements like this quite regularly. It is a hard reality. Carrier moms cannot relate their experiences with minor bleeding to the painful struggle of their children with severe or moderate hemophilia. The joint pain or microbleeds of carrier moms may seem trivial in comparison to the severe bleeds of their sons. As a result, some carrier moms delay or completely dismiss needed treatment.
Mild hemophilia is more common in female carriers than moderate or severe hemophilia. It usually manifests differently than severe hemophilia and often results in fewer spontaneous bleeds. But bleeds are still possible and must be addressed.
I have attended conferences for women with hemophilia. Attendees in their 40s and 50s complain about significant joint damage they attribute to small, untreated bleeds that occurred when they were younger. Like so many carrier moms, they compared their injuries to those of their sons and assumed they did not need treatment. Yet, just like men with mild hemophilia, many of them needed treatment.
The importance of including carrier moms
As the hemophilia community learns more about women with hemophilia, “symptomatic carriers,” and mild hemophilia in general, carrier moms must be included in discussions. Care for your children is critical, but you need to remember that you, too, may have issues connected to hemophilia that need addressing.
Every carrier and individual with hemophilia should have access to appropriate diagnosis and treatment. All carriers should test factor levels to determine the need for a treatment plan. Treatment for women with mild hemophilia should not differ from treatment for men with mild hemophilia. Women should have full access to necessary care.
Carrier moms with mild factor levels: You must permit yourself to access care, even if your injuries seem minor in comparison. Your children need you to be healthy and strong. You deserve diagnosis and treatment, too. It is OK to seek medical intervention for a minor joint ache that won’t go away. It may turn out to be a bleed that would benefit from treatment.
I encourage all carrier moms to connect with a local hemophilia treatment center to discuss testing factor levels and developing a treatment plan. You are worth it. Invest in your health for you and your child.
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.
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