Managing your child’s hemophilia

When parenting a child with hemophilia, it’s important to understand how you can support them as they learn to live with the bleeding disorder.

The two most common types of hemophilia, type A and type B, primarily affect males, while hemophilia C affects both sexes equally.

Hemophilia in infants is diagnosed through blood tests.

Remember that you’re not alone in managing your child’s hemophilia symptoms, which include bleeds and bruising. Resources and support systems are available to help, starting with your healthcare providers.

Some hemophilia treatment centers (HTCs) have pediatric hemophilia units. They can offer hemophilia patient education to help you and your child learn how to live well with hemophilia.

Self-care for caregivers

As a caregiver, you may be responsible for many aspects of managing hemophilia in children. For example, you may find yourself tracking symptoms, administering hemophilia treatments, and educating other caregivers and teachers about your child’s condition and what to do in an emergency. These responsibilities can lead to feelings of anxiety and stress.

Balancing your child’s needs with your own well-being can make a difference in how you deal with day-to-day challenges. Self-care tips to help you recharge and maintain your well-being include:

practicing mindfulness, deep breathing exercises, or yoga for stress relief
making time each day for activities you enjoy
reminding yourself that you can’t do everything yourself
saying no to tasks that are not a priority
delegating when needed
reaching out to family, friends, or professionals if you feel overwhelmed

Build a support network

Joining a hemophilia community can connect you with other parents of children who have hemophilia. You may also learn about healthcare professionals who can help you manage anxiety and stress and avoid caregiver burnout.

In-person and online support groups for hemophilia can also provide tips on managing hemophilia in children.

Patient advocacy organizations that offer resources and support for parents of children with hemophilia include:

During particularly stressful periods, you may want to set up regular appointments with a mental health counselor, social worker, or psychologist. Your child’s doctor, as well as HTCs in the U.S. and Canada, may be able to suggest mental health providers.

Also consider reaching out to family and friends for emotional support during difficult times.

Supporting your child

As a parent, it’s natural to be concerned about how your child will handle the emotional challenges of living with hemophilia.

Strategies you can help them learn include fostering open communication, building mental resilience, and nurturing a positive mindset.

Practice open communication

Teach your child to take a more active role in managing their hemophilia by learning how to express their needs and preferences. You can do this by:

using simple, age-appropriate language to explain how hemophilia affects their blood clotting
discussing the importance of being careful during activities
encouraging them to describe their symptoms, such as saying, “I need to rest because my joints hurt.”
offering guidance as they get older about how to talk with healthcare providers about their condition, symptoms, and treatment options
helping them figure out how much they want to share about their hemophilia with friends

Fostering resilience

Talking to your child about their hemophilia helps them build confidence and emotional strength.

When they’re young, teach them how to recognize the early signs of a bleed, when to rest, and when to get help from an adult or healthcare provider.

Typically, around 12 to 14 years old, depending on their maturity and understanding, they can begin taking more control over their hemophilia. This may include keeping track of treatment schedules and the hemophilia supplies used.

Safety and prevention

Making your home safe and helping your child perform activities safely are important aspects of parenting a child who has hemophilia, both for their physical health and your peace of mind.

Hazard-proofing the home

Check your home for hazards, and ask your HTC team for their safety recommendations.

For young children, consider adding safety measures like furniture padding, safety gates, and non-slip mats.

Physical activities

Advances in prophylactic treatments mean children with hemophilia can take part in more sports and other physical activities than in the past. With guidance, you can help your active toddler become an equally active school-age child and teenager.

You may want to consider safety gear, such as padded helmets and knee and elbow pads, to provide extra protection when playing or engaging in physical activity. Low-impact sports, which have a lower risk of falls or injury, are often recommended over high-impact or contact sports.

Some examples of low-impact sports include:

swimming
cycling
yoga or tai chi
walking
resistance training

If your child is interested in an activity with a higher risk of bleeding episodes, such as a contact sport, work together to find a balance. Research the activity, discuss any potential risks with their healthcare provider, and explore ways to make it safer.

Medical management

Hemophilia treatment guidelines focus on preventing and controlling bleeding episodes.

The type and severity of your child’s hemophilia determine the approach to medical management.

Hemophilia treatment options

The main hemophilia treatments try to manage bleeding episodes and prevent future ones.

Factor replacement therapy can both prevent and control bleeding by supplying clotting factors to replace missing or deficient proteins in the blood.
Non-factor replacement therapies promote clotting or enhance clot formation without replacing clotting factors.
Bypassing agents are medications that help the blood clot even in the absence of certain clotting factors and are often used in the presence of inhibitors.
Gene therapy is a newer approach that aims to treat the underlying cause of hemophilia.

Complementary therapy can help with some of the long-term complications of hemophilia. For example, a physical therapist can prescribe adaptive equipment to support joints damaged by repeated bleeding, such as braces and other orthotics.

You can also try to manage complications from hemophilia by:

knowing how to administer factor replacement therapy and first aid for bleeding episodes
applying pressure and elevating the area to help control minor bleeding
elevating the affected area and using ice to reduce swelling
administering pain relief medications

Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, should be avoided, as they can increase the risk of bleeding in people with hemophilia.

It’s also essential to have a treatment plan that includes clear directions for what to do in case of bleeding and when to seek medical help.

All caregivers, including family members and close friends, should be able to recognize signs of bleeding and know the emergency protocols.

If your child is too young or unable to communicate during an emergency, consider having them wear a medical alert ID tag that has their bleeding disorder and emergency contact information.

Educating others

Educating caregivers, teachers, and coaches about your child’s bleeding disorder is key to day-to-day management.

Communicating with schools

Finding child care for a young child with hemophilia requires thoughtful planning. Start by asking for recommendations, such as from your child’s healthcare team and parents in hemophilia support groups.

Ask potential caregivers or daycare staff about their experience in managing chronic conditions and how they handle emergencies, especially involving bleeding.

Some ways to maintain communication with caregivers and educators include:

sharing information about your child’s hemophilia, including treatment plans and emergency procedures
discussing your child’s specific needs, such as any activity restrictions or special accommodations
keeping caregivers updated on your child’s health status, including any changes to their condition or treatment plan
ensuring caregivers know how to contact you or your child’s healthcare provider in an emergency

If your child is in school, consider setting up an individualized health plan to provide guidance on your child’s hemophilia, including how to handle injuries and what precautions to take during activities.

Working with teachers, coaches, and group leaders helps everyone understand your child’s needs and how to support them. By involving all caregivers and educators in the care plan, you can create a strong support network that helps keep your child safe.

Long-term planning

Your approach toward managing your child’s hemophilia should evolve over time to account for their increasing self-sufficiency and understanding of their own health.

Adapting as your child gets older

During your child’s early years, your primary focus is on keeping your child safe and aware of their condition in simple, age-appropriate ways.

Often, by their teenage years, your child will begin wanting more independence. You can support them by encouraging self-management skills, such as allowing them to oversee their treatments, schedule appointments, and communicate with healthcare providers.

You can also encourage them to advocate for themselves — whether with teachers, coaches, or peers — and support their emotional resilience as they start to encounter the challenges of growing up with hemophilia.

Staying informed

Stay connected and up to date by finding reliable sources of information and engaging with the hemophilia community, which may include:

asking your child’s doctor about their current treatment, and whether options like gene therapy should be considered
attending hemophilia conferences to learn about the latest research and advancements
joining a support group to share experiences and learn from other families managing hemophilia

Hemophilia News Today also offers the latest news and first-person stories in columns and videos, as well as connections on social media, including Facebook, X, and Instagram.

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 other 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.