Caring for a child can be difficult — and even more so when they’re living with a complex chronic condition like hemophilia. Since bleeding disorders like hemophilia are rare, caregivers may feel alone when navigating the different stages of their child’s life. Being prepared for emergencies, recognizing unusual symptoms, and having to educate others are just a few of the challenges you’ll need to tackle over time.

Children can be affected by a range of bleeding disorders, including:

• Hemophilia A (low factor VIII)
• Hemophilia B (low factor IX)
• Hemophilia C (low factor XI)
• Von Willebrand disease (VWD)
• Other clotting factor deficiencies including factor I, II, V, VII, X, XII, and XIII

When your child has hemophilia, you may feel like you have a part-time job becoming an expert on bleeding disorders. The good news is that there are resources and communities that can help you keep your child as healthy as possible.

Find a Hemophilia Treatment Center

The first step is to connect with a team of experts by enrolling your child in a hemophilia treatment center (HTC).

Specialists at the center will work with you and your child on administering medication, getting dental care, and ensuring that your child is safe at school. At an HTC, you can consult with hematologists, social workers, doctors, nurses, physical therapists, and other health care providers who specialize in hemophilia care. HTCs are not just places to receive factor replacement therapy; they are also trusted sources where you can ask questions and discuss concerns.

Search for a hemophilia treatment center near you through the Centers for Disease Control and Prevention HTC website directory.

Be Prepared for Emergencies

Having a well-stocked hemophilia emergency kit at home is a must, especially for caregivers of children with hemophilia. This should include:

• First aid supplies
• A list of your child’s medications and health care professionals
• Treatment center information
• Cash
• Clotting factor
• Injecting supplies

Getting your child a medical alert bracelet can help give you peace of mind when they’re at school or out with friends. Medical alert bracelets help emergency responders quickly identify that your child has hemophilia, which can save time and prompt the right treatments in an emergency.

If a babysitter or another adult is responsible for your child’s care, ensure they know where the emergency supplies are located and what to do during bleeding episodes. Additionally, meet with your child’s school nurse, teachers, and coaches to develop a plan for emergencies at school, during field trips, or after-school activities.

Understand Different Bleeding Problems

You don’t have to know everything about hemophilia, but it’s important to learn how to distinguish between a serious bleed and a problem that can be handled at home. One of the trickier aspects of the disease is recognizing bleeds that don’t result from an obvious fall or cut.

Spontaneous bleeds can happen in the joints and cause damage that’s not easy to spot. Symptoms of joint damage can include:

• Swelling
• Tenderness
• Stiffness in the joint

Physical therapy can benefit some people with joint damage from hemophilia. Bleeding can also occur in the muscle, leading to an unexpected bruise, pain, and warmth.

If you find blood in your child’s vomit or stool, they could have a bleed in the digestive system. Finally, symptoms like headaches or seizures could indicate a brain bleed.

Talk to your child’s doctor about these potential issues ahead of time so you know how to respond if symptoms appear.

Educate Others on Your Terms

Because children with hemophilia bleed and bruise easily, caregivers may worry about what others think about these visible signs of injury. A small bump can lead to a big bruise that looks serious and might raise suspicions of physical abuse. These questions or suspicions can add unwarranted stress and put caregivers on the defensive. Making others aware of your child’s hemophilia and having a brief explanation ready can alleviate some of this added stress.

When you inform others about hemophilia, it’s important to mention that it’s a genetic condition. Explaining that hemophilia is not contagious can help prevent your child from being excluded from social situations, like playdates. Although it can seem tiresome to explain your child’s condition repeatedly, having a short, prepared description can make it easier.

For example, you could say: “You’ve probably noticed that my child gets a lot of scrapes and bruises. That’s because they have a genetic condition called hemophilia. It’s not contagious, and we have treatment to manage it. I don’t feel like getting into all the details, but you can read about it online if you’re curious.”

It’s up to you how much you want to share or who you want to tell. But keeping your explanation simple and to the point gives your child language they can use to tell others about hemophilia too. It also shows your child that they have nothing to be ashamed of. By not hiding your child’s condition, you can help reduce any stigma they might feel.

Make Life as Normal as Possible

Children with hemophilia can live a normal life. While doctors may recommend avoiding particularly high-risk activities, like contact sports, it’s important to resist the urge to “bubble wrap” your child. Physical activity is good for their health and development. Swimming is recommended as a safe exercise for children with hemophilia. Your being overly protective can make them anxious and undermine their confidence. It’s also exhausting for you.

Don’t let hemophilia define your child. Instead, treat them like any other child. Educate them about hemophilia and explain that it’s one small part of who they are. Build your child’s self-esteem by encouraging them to take appropriate risks and stay calm when injuries happen. As they get older, give them age-appropriate responsibilities, such as putting on their own bandages and eventually preparing their factor concentrates.

Mental Health Care for You and Your Family

Being a caregiver isn’t easy. The added layers of stress that come with caring for a child with hemophilia can take a significant toll on your mental health. Every caregiver worries about their child getting hurt — but when minor injuries can turn life-threatening, it’s normal to feel like you’re always on high alert. As children and adolescents grow and gain more independence, some fears may subside while new worries emerge.

Caregivers of children with hemophilia need ongoing support, too. Since hemophilia is a rare condition, it’s not uncommon to feel misunderstood or isolated in your local community. Fortunately, online networks like MyHemophiliaTeam have opened up new spaces for people to connect from across the world — people who have shared the experience of raising a child with hemophilia.

In addition to building your support network with peers, meeting with a licensed mental health counselor can help you cope with stress, anxiety, or feelings of depression. A counselor’s office is a good place to share your feelings and concerns without judgment.

Getting support for yourself sets a positive example for your child. In addition, kids with hemophilia can benefit from connecting with other people with blood disorders.

Talk With Others Who Understand

MyHemophiliaTeam is the social network for people with hemophilia and their family members. On MyHemophiliaTeam, more than 6,000 members come together to ask questions, give advice, and share their stories with others who understand life with hemophilia.

What kind of support have you found through your child’s care team? Share your experience in the comments below, or start a conversation by posting on your Activities page.