Where to Find Support When Your Child Has Hemophilia

It’s normal for parents of kids with bleeding disorders to go through denial, anger and grief before accepting the diagnosis. These overwhelming feelings can be exacerbated by the idea that no one understands what you’re going through—and the belief that you’re the only one who can protect your child.

However, there is support for parents of children with hemophilia if you know where to look. Many of these resources are available online, so that even if you’re located in a rural area or on a military base, you can still find companionship, education and support.

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Hemophilia Support Is Closer Than You Think

• Your hemophilia treatment center. Hemophilia treatment centers, or HTCs, are federally funded medical centers that employ physicians, nurses and other medical professionals. At an HTC, your child can receive care from hematologists, orthopedists and physical therapists, as well as mental health counseling for emotional or social issues.Find your nearest hemophilia treatment center here.

• Your family or spouse. When your child is first diagnosed with a bleeding disorder, your family may feel just like you—overwhelmed and unsure. But you can still lean on family members for support. Ask for help in clear ways, such as “Can you take Alex to the hematologist today?” or “Could you chop a few veggies for dinner?” Asking specific favors doesn’t just allow you to prioritize what you need; it also gives your family clear ways to help you.Similarly, when you and your spouse are struggling to figure out who will keep an eye on your young child before he or she has learned to avoid risky behaviors, it helps to outline each person’s responsibilities.Finally, empower your family by creating your child’s hemophilia care plan. If you need help explaining your child’s bleeding disorder to family, friends or childcare providers, the National Hemophilia Foundation offers several helpful forms and info sheets.

• In-person support groups and events. The Hemophilia Federation of America offers multiple events each year for those diagnosed with hemophilia and those who love them. View the full calendar here.In addition, the National Hemophilia Foundation has founded chapters in nearly every state. You can locate the chapter nearest you here.

• As well as being a great source of information, the Internet offers many deeply supportive communities for families facing hemophilia.HemophiliaMoms.com shares mothers’ stories of everything from learning of their child’s disorder to how they’ve learned to address and overcome hemophilia.Facebook is also a good place to find support and companionship groups, both local and nonlocal. Search “hemophilia support,” “hemophilia parents,” “hemophilia moms” and other terms to find a group. Though many groups are closed, you can simply send a message requesting membership.As your child gets older, he or she can also join online forums for support. Reddit’s r/hemophilia thread is an active community of “bleeditors,” while the Hemophilia Federation of America hosts Blood Brotherhood and Blood Sisterhood forums.

• From yourself. Though your child’s initial diagnosis may be tough to deal with, their bleeding disorder will not define them. Acknowledge your successes as they come, and consider sharing your story with others who may be looking for the same support you are.

Did we miss any support groups? Is there something else we should add? Let us know.