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Tips to help you navigate your hemophilia journey.

Here you’ll find information to help you live more successfully with hemophilia. From staying active and healthy to managing bleeds, it’s all easier when you know what to do and are prepared to do it.

Tips to help you navigate your hemophilia journey.

Here you’ll find information to help you live more successfully with hemophilia. From staying active and healthy to managing bleeds, it’s all easier when you know what to do and are prepared to do it.

Ready for anything.

Ready for anything.

It’s even more important to prepare for life’s ups and downs when you’re living with or caring for someone with a bleeding disorder.

Preparing for emergencies.

Preparing for emergencies.


Whether it’s for you or your child, a visit to the ER is never easy or expected. Here are some ideas for preparing ahead of time so you’ll be ready.

What to do before an emergency happens:


Register at your local hemophilia treatment center (HTC) so your HTC will be ready to speak with ER staff


Ask your HTC to recommend an ER. Some ERs have “fast tracks,” where the sickest patients are seen sooner


If possible, choose an ER with a hematologist on staff


Keep a bag packed with items you’ll need:


All medicine and supplies such as factor, an infusion kit, pain medicine, and ice packs


A copy of a hemophilia emergency letter from your doctor or HTC


Copies of your or your child’s medical history


Snacks, games, books, or toys to help your child pass the time


Call your HTC or doctor before you leave for the ER. They may be able to help you get treatment sooner once you arrive.

Guidelines for deciding when to head to the ER.

Your doctor or HTC can help you decide if a bleed is serious enough for emergency care. In general, you should go to the ER if you or your child:


Have active bleeding with no infusion at home


Need an infusion and your HTC is closed


Have a head or stomach injury


See blood present in the stool or are throwing up blood


Experience a lack of feeling in an arm or leg


Have any unusual bleeding


Guidelines for deciding when to head to the ER.

Your doctor or HTC can help you decide if a bleed is serious enough for emergency care. In general, you should go to the ER if you or your child:


Have active bleeding with no infusion at home


Need an infusion and your HTC is closed


Have a head or stomach injury


See blood present in the stool or are throwing up blood


Experience a lack of feeling in an arm or leg


Have any unusual bleeding


Preparing for medical or dental procedures.


If you’re having a planned surgery or dental procedure, the first step is to talk to your health care providers:

Doctors, dentists, and surgeons need to know about your bleeding disorder and how to prepare for bleeds

Alert health care providers that even small, routine surgeries can cause prolonged bleeding

Ask your specialty pharmacy or HTC to work with your doctor to ensure you get the right care

Closeup of a stethoscope held by a healthcare professional
Closeup of a stethoscope held by a healthcare professional

Preparing for medical or dental procedures.


If you’re having a planned surgery or dental procedure, the first step is to talk to your health care providers:

Doctors, dentists, and surgeons need to know about your bleeding disorder and how to prepare for bleeds

Alert health care providers that even small, routine surgeries can cause prolonged bleeding

Ask your specialty pharmacy or HTC to work with your doctor to ensure you get the right care

Keeping your teeth and gums healthy.

For children and adults with hemophilia and other bleeding disorders, it’s vital to maintain the best possible oral health. Minimize dental problems and the risk of complications by focusing on preventive care under the guidance of your dentist. Follow these guidelines when searching for dentist:


Ask up front if the dentist will see people with a bleeding disorder


If you’re having trouble finding a dentist, check with your HTC and your local National Hemophilia Foundation chapter for referrals


Ask around your hemophilia community about dentists who will understand your needs


Look for hospital-based dental clinics in your area


Closeup of female patient in examination chair facing away from camera with dentist talking to her and facing camera
Closeup of female patient in examination chair facing away from camera with dentist talking to her and facing camera

Planning ahead for oral surgery.

Certain procedures, such as tooth extractions or other oral surgeries, should start with a consultation with your hemophilia treatment center or hematologist and your dentist to determine what precautions need to be taken.

Preparing for a trip.

Preparing for a trip.


For people living with hemophilia, traveling smart means planning ahead and knowing what to do in case a bleed happens.

Travel smart:


Take a copy of all prescriptions and labels that identify the medicines


Check your health insurance for travel restrictions


Always carry your medical ID in case of an emergency


Build extra time into your schedule, especially if you use strollers, wheelchairs, or crutches

Plan ahead for bleeds:


Bring extra factor and supplies


Make sure you have proper storage for your medicine if needed


Keep your medicine accessible in case you need it


Know the names and locations of the nearest HTCs around your destination


Bring your health insurance card or other insurance documents you may need

Do you know where the hemophilia treatment centers (HTCs) and hospitals closest to your destination are? Check the list at the Centers for Disease Control and Prevention.

Do you know where the hemophilia treatment centers (HTCs) and hospitals closest to your destination are? Check the list at the Centers for Disease Control and Prevention.

Going through airport security?


Pack your medicine in your carry-on—not in checked baggage


Get a letter from your doctor or HTC to explain your need for medical supplies


Allow extra time to arrive and check in, especially if there are mobility issues


Request a seat with extra legroom for your knees


Special rules apply for bringing medicine and using wheelchairs. For more, go to: www.tsa.gov


Airport signage saying Security with travelers in the background

Moving through life.

Learn how to transition through various stages of life with hemophilia, from self-infusing to going to college.

Building community.

Get tips on building a strong support system—an important component of living with hemophilia.

Moving through life.

Learn how to transition through various stages of life with hemophilia, from self-infusing to going to college.


Building community.

Get tips on building a strong support system—an important component of living with hemophilia.