Bleeding emergencies can happen at any time when you’re living with hemophilia or another severe bleeding disorder. Whether you’re preparing for yourself, your child, or another loved one, it’s important to have an emergency kit ready so you can respond quickly.

Some supplies belong in a physical go bag. Other information, medication, and plans should be kept close by so you can grab them quickly. If you’re traveling, keep your emergency kit with you whenever possible.

Click each item in the emergency kit to learn more.

Be Prepared for Bleeding Episodes

Sometimes bleeding episodes may occur spontaneously (without a clear cause). In other cases, a bleeding emergency may be due to trauma or an injury.

MyHemophiliaTeam members have discussed emergency preparedness and how emergency kits have helped them when bleeding happens suddenly.

One member found theirs useful in the emergency room (ER): “I had a car accident this past Thursday. I hit a deer, and my truck fell into a ditch. ER couldn’t spell ‘hemophilia,’ let alone figure out what to do, so I had to explain things, of course. Luckily, I keep my kit on me!”

“I was out fishing in cold spring water,” another MyHemophiliaTeam member wrote. “Glad my wife packed my factor kit in our gear bags. … We were only going 30 miles to camp, but she insisted on taking my factor so I wouldn’t ruin the camping trip by having to drive back home for an infusion and miss the kids fishing.”

Your hematologist and hemophilia healthcare team can advise you about specific items to keep in your hemophilia emergency kit based on your individual needs. Your doctor can also answer any questions you may have about emergency care and how to make an emergency plan.

What To Do During a Bleeding Emergency

For a possible serious bleed, follow your care team’s instructions right away.

Basic hemophilia first aid steps may include:

• Protecting the injured area from further harm
• Applying firm pressure with a clean bandage or gauze
• Applying more bandages if blood soaks through that bandage
• Resting the injured area
• Applying ice or a cold pack, if recommended by your care team
• Elevating the injured area

These steps are sometimes called the PRICE protocol: protection, rest, ice, compression, and elevation.

For a possible serious bleed, follow your emergency plan and contact your hematologist, HTC, or emergency services right away.

What To Keep in Your Emergency Kit

Here are some crucial items to have on hand in case of an emergency.

1. Emergency Paperwork

Certain paperwork is important in the event of an emergency. You may want to make several copies of important documents to keep on hand in case they’re needed, including:

• A health insurance card
• Current medical information on your or your loved one’s condition, including a list of any medications taken
• A list of nearby hemophilia treatment centers and hospitals, with maps or directions
• Contact information for your doctor, HTC, and emergency contacts
• An emergency care letter from your doctor that explains your bleeding disorder and treatment plan

Key family members should all have a copy of emergency paperwork. You can also keep a copy of paperwork in the car, around your home, at work, and in schoolbags, as well as in your bag.

Keeping a digital copy on your smartphone can also be helpful. But in case you lose service while traveling or your phone dies, it’s best to have physical copies, too.

2. Hemophilia Infusion Log or Treatment Log

A treatment log — sometimes called a hemophilia infusion log — is an important tool for people with hemophilia or another bleeding disorder. It’s particularly helpful during an emergency bleed.

Treatment logs track important information about prior bleeds, treatments used, and other ways bleeds have been managed. An accurate log should capture all infusions and bleeds. It can include:

• Date and time of each infusion
• Date and time of each bleed
• Where the bleed happened and how severe it was
• Reason for treatment, such as routine prophylaxis (preventive treatment), surgery, injury, or a spontaneous bleed
• Treatment product name, expiration date, lot number, and dose or number of units given
• Other steps taken, such as pressure, bandages, pain medicine, or ice
• Any side effects, complications, or unusual symptoms

Also note if you or your loved one has developed inhibitors (antibodies that can stop factor treatment from working as expected) and may need an alternative to factor replacement therapy in an emergency.

If inhibitors are part of your history, your emergency plan may include a different type of clotting medicine, often called a bypassing agent, because standard factor replacement may not work.

You can talk to your hematologist about how to set up a treatment log — with either a phone app or another method — so that important information can be easily shared.

“My app that I keep my bleeding log in says it’s been 18 days since my last bleed,” one MyHemophiliaTeam member said.

Family members and caregivers should be informed about where a treatment log is kept so they can find it quickly if needed.

3. Ice Packs

Ice packs can be kept in the freezer to help ease joint pain and swelling due to hemophilia. Instant, single-use ice packs that become cold when squeezed are also available.

You can place ice on the affected area for 10 to 20 minutes every one to two hours, or as directed by your care team.

Don’t apply ice directly to the skin. Use a washcloth or another barrier to protect your skin.

“Currently bleeding in my arthritic knee and an ankle. Have my ice packs on,” a MyHemophiliaTeam member shared.

4. Factor Infusion Supplies or Other Bleed Medications

If you or a family member has learned how to properly infuse clotting factor to help stop uncontrolled bleeding, it’s important to prepare a factor infusion kit or other emergency medication and carry it with you when you go out.

People with bleeding disorders are encouraged to keep an emergency dose of factor concentrate with them and bring treatment with them when traveling. Emergency departments should have timely access to factor products, but your care team may advise you to bring your prescribed treatment when traveling.

Different treatments can affect which clotting medicines are safest. For instance, some bypassing medicines used for inhibitors may not be recommended with certain preventive treatments. Your emergency care letter should name the exact emergency medicine and dose your care team recommends.

Supplies for injecting factor or another medication may include these items or others, depending on your condition and treatment plan:

• Factor VIII (8) for hemophilia A
• Factor IX (9) for hemophilia B
• Desmopressin acetate (DDAVP), if prescribed, for some people with mild hemophilia A who have had testing that shows DDAVP works for them
• A bypassing agent, if prescribed for inhibitors
• Plastic syringe
• Needles and a sharps container
• Wipes, gauze, bandages, and gloves
• Additional medication, if prescribed

Other emergency medications that are sometimes used during bleeds include:

• Aminocaproic acid
• Tranexamic acid (Cyklokapron)
• Acetaminophen for pain, if recommended by your care team

Aminocaproic acid and tranexamic acid are typically used for mouth bleeding or dental bleeding. For pain, avoid aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, unless your care team tells you otherwise. These medicines can increase bleeding risk.

Follow your product’s storage instructions, including rules about refrigeration, room temperature, mixing, and expiration dates.

Your doctor can offer precise instructions on how to properly prepare an emergency injection kit and which supplies you should take when you go out.

Your hemophilia care team can also provide training on giving injections and other important steps that can help control bleeding.

5. Hemophilia Medical Alert Bracelet, Necklace, or Digital Medical ID

Wearing or carrying medical alert jewelry helps ensure that emergency responders have important information about your hemophilia.

You can also set up a digital medical ID on your smartphone or use another digital alert service as a backup. However, it shouldn’t replace a visible medical alert ID if your care team recommends one.

These items should include:

• Your specific diagnosis, such as hemophilia A or hemophilia B
• What factor or medication you use for treatment
• Any allergies
• Your blood type
• Emergency contact information

Your healthcare team can advise you on medical alert products and ways to make your medical information quick and easy to access.

Take Steps To Help Prevent Emergencies

You can help reduce the risk of emergency bleeds by sticking to your treatment plan and maintaining your recommended prophylaxis regimen.

Hemophilia and other serious bleeding disorders can sometimes be challenging to manage, but treatment options continue to improve.

Join the Conversation

On MyHemophiliaTeam, people share their experiences with hemophilia, get advice, and find support from others who understand.

What items do you keep ready for a bleeding emergency? Let others know in the comments below.