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.
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
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
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
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.