What to do during a bleeding emergency with hemophilia
Fact-checked by When you or someone you love has hemophilia, even what seems like a minor bleed can quickly become serious. Knowing how to recognize a bleeding emergency and what steps to take can help you respond quickly and feel more prepared in a stressful moment.
Not every bruise or nosebleed is an emergency, but knowing what to do during a hemophilia bleed can help you stay calm and act quickly when treatment is needed most.
What counts as a bleeding emergency?
Five major sites of serious bleeding could threaten life, movement, or long-term function and should be considered a bleeding emergency in hemophilia. Hemophilia emergency signs include bleeds in the head or spine, throat, eyes, abdomen, and muscles. A deep external wound or injury to any of those regions should prompt a call to your healthcare provider, immediate intervention, or a trip to the emergency room (ER).
Warning signs include severe pain or swelling in a joint or muscle, heavy bleeding that won’t stop, or signs of internal bleeding, such as blood in the vomit, stool, or urine. In these cases, treatment may need to start immediately, even before tests confirm the bleed.
Warning signs that need immediate attention
With hemophilia, it’s important to take any sudden changes seriously, especially after a fall or a hit to the body. Seek medical help right away for any of the following signs:
- a new or unusual headache, sleepiness, confusion, vomiting, vision changes, or loss of consciousness
- neck, throat, tongue, or face swelling that can interfere with breathing
- abdominal pain and blood in vomit
- black, bloody, or tar-like stool
- weakness, numbness, or tingling in the arms and feet
- difficulty urinating or having a bowel movement
- a hand or foot that looks pale or feels cool
These signs may point to internal bleeding, which can compress vital organs and tissues. For example, bleeds in certain leg or arm muscles may increase pressure and reduce blood flow, leading to permanent tissue damage.
What to do at home first
If you are experiencing serious bleeding in hemophilia or suspect internal bleeding, follow your hemophilia care plan right away. If you’ve been trained to give factor treatments or another prescribed bleed treatment at home, use it as directed and don’t wait for testing.
For a joint or muscle bleed, use the PRICE strategy to help protect the area before seeking additional care:
- Protect: Limit use of the limb with a brace, splint, or crutches if available
- Rest: Avoid putting weight on the area
- Ice: Use a wrapped ice pack for 10 to 20 minutes at a time
- Compression: Wrap the area gently with an elastic bandage, but remove it if you feel numbness, tingling, or coldness
- Elevation: Raise the injured area above the level of your heart while resting
If there’s an open cut, apply steady pressure with clean gauze or a cloth. Always keep your emergency supplies and care team numbers in one place so you can act quickly.
When to call your care team
It’s best to call your hemophilia care team whenever a bleed feels unusual or doesn’t stop after 20 minutes, or if you are unsure what to do next. Your hemophilia treatment center (HTC) can help decide whether you need more treatment, an ER visit, or follow-up care.
HTCs are staffed by healthcare providers who specialize in bleeding disorders, including hematologists, nurses, social workers, and physical therapists. They can provide guidance if you’re not sure where to seek care after a bleeding incident.
When to go to the emergency room
Knowing when to go to the ER with hemophilia can help avoid delays in care. Go to the ER or call 911 if you notice any of the following signs:
- changes in vision or consciousness
- seizure
- projectile vomiting
- trouble breathing or swallowing
- blood in the vomit or stool
- sudden dizziness or weakness
- abdominal swelling
- sudden weakness, numbness, or tingling in an arm or leg
These symptoms may indicate that a bleed needs treatment right away, even before a thorough assessment is done. Bring your own hemophilia treatments to the emergency room with you, if possible. Emergency departments should allow you to use your own prescribed treatments when appropriate.
What information to bring with you
The ER team probably won’t have your full hemophilia history readily available. A small “go folder” can help them treat you more quickly and correctly. This folder should include the following information:
- a letter from your hemophilia provider or HTC describing your hemophilia type and severity
- your treatment plan, including dosing instructions
- your hematologist and HTC contact information
- a list of your current medicines, allergies, and inhibitor status, if known
- your insurance card and medical ID
Keeping an emergency plan, supplies, and important contact information in one place can help you respond more quickly during a bleeding emergency. A little preparation can make it easier to speak up, get the right care quickly, and feel more confident during a hemophilia bleeding emergency.
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.
