How to make a hemophilia bleed prevention plan

Last updated June 10, 2025, by Susie Strachan
Fact-checked by Joana Carvalho, PhD

A hemophilia bleed prevention plan can be an important part of managing your condition.

Bleeding episodes can happen without warning. And while some may be minor, others have the potential to be life-threatening, especially when involving your neck, head, abdomen, or chest.

In an emergency, a well-prepared plan that includes how to treat, whom to contact, and when to head to the hospital can help you respond quickly and confidently, whether you are treating yourself or a loved one, such as your child.

The benefits of a prevention plan

When you or someone else is bleeding, it can be hard to remember in the moment what to do next or how to explain it to others. Having a written plan to show or refer to makes it easier for everyone to know what to do.

A hemophilia bleed prevention plan may also help you have fewer bleeds, which can reduce long-term damage to your joints. And when a bleed does occur, it helps make it more likely it’ll be well managed and less likely you’ll need to go to the ER.

If you’re the parent of a child with hemophilia, a plan makes it easier to share preventive healthcare information with teachers, coaches, babysitters, and others who spend time with your child.

What to include in a bleed prevention plan

When creating a bleed prevention plan, first think about the most important steps to take during a bleed, including:

type and severity of hemophilia
current treatment plan, such as factor replacement therapy
treatment instructions, such as dose and timing
emergency contacts
tips to reduce the risk of injury.

Before finalizing your plan, ask your hemophilia care team to review it.

Recognizing signs of a bleed

Your plan should include the typical signs of a bleed, which vary depending on the region that is affected. Potential signs may include:

tingling
warmth
swelling
pain or tenderness in joints
large or deeply colored bruises
being unable to move an arm or leg.

For younger children, who may not be able to describe their symptoms, some other common signs to look for include:

limping or not walking, or crawling
unusual fussiness or irritability.

What to do during a bleed

Your bleed plan should include step-by-step instructions for factor replacement therapy, such as when and how to give, and the amount. Also include any medications you should not take, such as aspirin and other nonsteroidal anti-inflammatory drugs (NSAIDs), which can prevent blood clotting.

It should also list everything needed for treatment, including where you keep your medication and infusion or injection supplies, such as syringes, alcohol swabs, and gloves.

Some bleeds can be serious even when they are not visible. If you are not certain someone with hemophilia is bleeding, treat it like a bleeding episode.

When to get emergency help

Include clear directions on when to go to the emergency room or call your doctor. Some bleeds need urgent medical attention, especially if they involve the head, neck, or abdomen. It’s important to list these signs in your plan so others can act quickly if necessary.

Check with your hemophilia team about other warning signs you should include.

Possible signs that immediate treatment is needed include:

headache or head injury, especially if followed by vomiting, drowsiness, confusion, or seizures
severe abdominal pain
vomiting or coughing up blood
neck pain, stiffness, or trouble swallowing or breathing
sudden difficulty moving a limb
swelling, pain, or other signs of a bleed that continue to worsen after 24 hours and don’t ease with treatment.

Emergency contact information

Emergency contacts for your doctor, hemophilia treatment center, nearby hospitals, and family members should be in a prominent section of your plan.

Emergency contacts should also be kept in multiple places that are easy for someone to find and, ideally, always with you, such as on a wallet card, your phone’s contact list, or in a medical alert app.

Reduce bleed triggers

Consider adding a list of situations that may put you or your child at higher risk of injury to your bleed prevention plan.

If you or your child enjoys activities like skiing, snowboarding, soccer, and other team sports, make sure coaches are aware that your child has hemophilia. Give the coaches a copy of the plan and explain what to do in case of an injury.

Also, note any protective gear you or your child must use and tips for adapting daily routines to prevent falls or bumps.

A medication kit should always be with you or your child during high-risk activities.

Keep your plan up to date

Review your plan regularly with your hemophilia care team, and whenever your medication doses and routines have changed.

Always update your plan before traveling and check that your emergency kit is stocked with everything you need. Keep a printout in your first-aid kit, include it in your travel bag, and consider having a digital copy on your phone.

Share the plan

You should have multiple copies of your emergency plan in accessible places in your home, including with your hemophilia supplies and first-aid kit. You can also place it on your refrigerator.

If you have a school-age child who has hemophilia, you should share a copy of the bleed prevention plan with whomever spends time with your child, including:

school teachers and other personnel
after-school program or club leaders
coaches or dance instructors
babysitters, relatives, or anyone who provides care.

Make sure everyone knows who to call, when and how to treat bleeding episodes, and signs to watch for. This also applies to the people you work with and who regularly spend time doing activities that put you at risk of getting bumped or injured, such as at the gym or when playing contact sports. This helps ensure that everyone understands how to act quickly and with confidence.

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.