Bleeding emergencies can occur at any time when you’re living with a severe bleeding disorder. Everyone with hemophilia A or hemophilia B is at risk of life-threatening bleeding episodes, and some people with von Willebrand disease may be too. Whether for yourself, your child, or another loved one, it’s vital to be prepared with an emergency kit that can quickly provide care.

Be Prepared for Bleeding Episodes

Sometimes bleeding episodes may be spontaneous, without any noticeable cause. In other cases, a bleeding emergency may be due to a trauma or injury. MyHemophiliaTeam members have discussed emergency preparedness and how emergency kits have helped them when bleeding suddenly occurs.

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. She’s pretty good at watching out for me. 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 health care team can advise you more on specific items to keep in your hemophilia emergency kits based on your particular needs. Your doctor can also answer any questions you may have about emergency care and how to make an emergency plan.

What To Keep in Your Emergency Kit

Here are some crucial items to have on hand in case of an emergency. Some items should be in your go-bag emergency kit. Other items should be on hand and ready to pack as needed.

1. Emergency Paperwork

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

• A health insurance card
• Current medical information on your or your loved one’s specific condition, including a list of any medications taken
• A list of nearby hemophilia treatment centers (HTCs) and hospitals, with maps that show how to get there
• Contact information for your doctor, HTC, and emergency contacts

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 go-bag.

2. Treatment Log

A treatment log — sometimes called an infusion log — is an essential tool for people with hemophilia or another blood disorder and is particularly valuable during an emergency bleed. Treatment logs track important information about prior bleeds, treatments used, and other ways bleeds have been managed. Also note if you or your loved one developed inhibitors (substances that form in blood after prolonged treatment with factor concentrate) and need an alternative to factor replacement therapy in an emergency. You can talk to your HTC about how to set up a treatment log — with either a mobile phone app or another method — so that vital 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. Cash

Keep an ample supply of cash and change to cover emergency expenses such as taxis, public transportation, parking, and tolls. If you need to get to an HTC or a hospital ER, you don’t want to be slowed down because you don’t have the cash.

4. Ice Packs

Ice packs can be kept in the freezer to relieve severe joint pain due to hemophilia. Instant, single-use ice packs that become cold when squeezed are also available. It’s important to note that although ice may help with joint pain, research shows that ice packs may impair clotting. Also, ice packs may not be the best idea if you or your loved one has cold intolerance due to a condition such as Raynaud’s disease or a nerve disorder.

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

Learn more about ways to protect your joints with severe hemophilia.

5. 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 to carry it with you when you go out. Clotting medications can also be taken to an HTC or ER, which may not have its own supply. It’s advisable to keep an emergency supply of as much factor or other clotting medication as your health insurance company will allow.

“Having a spontaneous elbow bleed. Thank God I had some emergency factor that was donated to me,” a MyHemophiliaTeam member wrote.

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

• Factor IX (9) powder for hemophilia B
• Factor IX complex powder for some people with hemophilia A
• Factor VIII (8) for hemophilia A
• Sterile water
• Plastic syringe
• Another medication for injection or to take orally or via nasal spray

Other emergency medications that are sometimes used during bleeds include:

• Desmopressin acetate (DDAVP, Stimate)
• Aminocaproic acid (Amicar)
• Tranexamic acid (Cyklokapron)

Factor powder and other clotting medications need to be refrigerated and shouldn’t be used past the expiration date. Your doctor can offer precise instructions on how to properly prepare an emergency injection kit and which supplies you should take with you each time you go out. Your hemophilia care team can also provide training on giving injections and other critical steps that can provide lifesaving blood clotting.

6. Medical Alert Bracelet or Necklace

Wearing or carrying medical alert jewelry helps ensure that emergency responders have lifesaving information about your hemophilia. These items should be engraved with:

• Your specific diagnosis (hemophilia A or B)
• What factor you use for treatment
• Any allergies
• Your blood type

Your health care team can advise you on medical alert products and protection plans to make your medical information quickly and easily accessible.

Take Steps To Help Prevent Emergencies

You can help avoid emergency bleeds by sticking to your treatment plan and maintaining your recommended prophylaxis (preventive) regimen. People with hemophilia are living longer than ever, thanks to advancements in treatment. Hemophilia and other serious bleeding disorders can sometimes be challenging to manage, but new treatments are showing promising results in reducing bleeds and increasing quality of life.

You may want to ask your doctor if newer options, such as gene therapy, may be appropriate for you. The U.S. Food and Drug Administration (FDA) recently approved two gene therapy treatments — etranacogene dezaparvovec-drlb (Hemgenix) for hemophilia B and valoctocogene roxaparvovec-rvox (Roctavian) for hemophilia A. These one-time treatments aim to eliminate the need for replacement clotting factor.

Find Your Team

MyHemophiliaTeam is the social network for people with hemophilia and their loved ones. 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 other items do you keep in your hemophilia emergency kit? Share in the comments below, or start a conversation by posting on your Activities page.