- Without prompt treatment, bleeding episodes can become a life threatening emergency.
- Natural disasters or other disruptions can make it harder to access medical care.
- Creating an emergency plan, packing an emergency kit, and taking other steps to prepare for a potential emergency can help you better manage unforeseen circumstances.
Hemophilia B is a genetic condition that limits your blood’s ability to clot. It can cause prolonged bleeding after an injury or surgery.
If you have severe hemophilia B, you may have spontaneous bleeding with no injury. Without prompt treatment, bleeding episodes can become a life threatening emergency.
Natural disasters and other disruptions can make it harder to access medical care. Even vacations or short trips away from home may be risky if you aren’t prepared. Taking time to plan ahead can help you manage bleeding episodes in a variety of circumstances.
Read on to learn how to prepare by making an emergency plan and more.
Consider taking some time to create an emergency plan with other members of your household.
First, start by researching potential disasters and resources for managing them:
- What types of disasters could affect your community or household? For example, some communities are prone to wildfires, floods, or extreme weather events.
- How does your community alert people of disasters? For instance, your local government might issue warnings by text message, sirens, or other signals.
- What disaster plans are in place? Your local and state governments, workplace, school, or other organizations might have disaster management plans that you can review.
- What organizations provide support? This might include local emergency services, state and federal aid organizations, and nonprofit or community groups.
Next, work with members of your household to create a shared disaster management plan:
- Plan for the disasters that are most likely to affect your community and family: Talk about what you’ll do and where you’ll go if you need to evacuate your home or community. Make a list of things to bring with you.
- Pick two shared meeting spots: Choose one spot right outside your home where you can meet in the case of a disaster. Choose another spot outside your neighborhood in case it’s not safe or practical to meet outside your home.
- Designate an emergency contact: Ask a friend or family member who lives outside your community to act as your emergency contact. With their permission, consider sharing their contact information with friends, family members, and your hemophilia treatment center.
Consider how you’ll manage hemophilia if a disaster occurs:
- Take stock of your treatment needs: Identify the medications and supplies you need to prevent and treat bleeds. Keep a stock of supplies on hand and research places where you can restock if your usual suppliers aren’t accessible.
- Teach others how to help you: In some cases, you might not be able to treat yourself when a bleed occurs. Teach family members and friends how to recognize and respond to a bleeding episode in the case of an emergency.
- Post emergency contact information: Post or store contact information for your hemophilia treatment center and other emergency contacts in places where this information is easy to find. Share it with other people who might need it.
- Identify the nearest hemophilia treatment center: Map out a route from your home to the nearest treatment center. You might also plot a route from work, school, or other sites that you regularly frequent.
- Plan for power outages: If you have medication that needs to be refrigerated, develop a plan for keeping it cool if you lose power or don’t have access to your refrigerator.
If your nearest hemophilia treatment center closes due to a disaster, contact the National Hemophilia Foundation’s Information Resource center at 1-800-42-HANDI (800-424-2634) or email email@example.com. They can help you locate another hemophilia treatment center and other emergency resources.
Consider adding reminders to your calendar to regularly update and review your emergency plan with members of your household. Conducting emergency preparedness drills may also help you get ready.
In the case of a disaster, you might need to evacuate your home or community quickly. Creating an emergency kit can help you prepare for a hasty exit.
Standard emergency kit contents include:
- a first-aid kit
- a 3-day supply of bottled water
- a 3-day supply of non-perishable food
- basic cooking and eating utensils
- blankets or sleeping bags
- a change of clothing and footwear
- personal hygiene and sanitation supplies
- copies of important documents and contact information
- other tools and supplies, such as:
- paper and pencil
- a cellphone charger
- a flashlight and radio, with extra batteries
- waterproof matches
- a solar battery charger
If you have hemophilia B, it’s also important to pack:
- a supply of your prescribed clotting factor
- any other medication that your doctor has prescribed
- equipment for safely administering your medication
- a sharps container for used needles
- an infusion log, if you keep one
If you have insurance coverage, the
Some clotting factor products and other medications last longer at room temperature than others. You may need to keep your medication in the refrigerator until you leave your home.
When the time comes to add your medication to an emergency kit or go-bag, consider packing it in a resealable bag or insulated container with an ice pack. Keeping multiple ice packs in your freezer can help you stay ready.
Make sure you check the expiration dates of your supplies, and replace them when necessary.
Pack all of your emergency kit supplies in watertight containers to keep them dry. Store your emergency kit in a location where it’s easy to grab, and consider taking it when you travel on long trips.
Even when you’re leaving your home for routine activities or planned trips, it’s important to be prepared for a potential bleed.
Consider keeping a go-bag of clotting factor and other supplies ready at all times so that it’s easy to grab when you’re heading out the door. Follow the manufacturer’s instructions for proper storage, and promptly replace expired supplies.
Along with your clotting factor and other supplies, consider keeping an emergency care letter in your emergency kit and go-bag.
This letter should provide essential information about your condition, such as:
- the specific type of hemophilia you have
- whether you have inhibitors that make factor IX less effective
- the type and dosages of medication you take to prevent and treat bleeds
- any other medications that you take
- any allergies that you may have
- emergency contact information
- information about your hemophilia treatment center
You can also share a copy of this letter with friends, family members, and other people who might need to help you in the case of an emergency.
If you have a child with hemophilia B, consider downloading and completing a copy of these forms from the Hemophilia Federation of America:
- Individual health plan: This provides instructions for managing bleeds.
- Medical consent form: This authorizes caregivers and emergency services personnel to provide treatment.
Consider sharing a copy of the completed forms with your child’s babysitters, teachers, or other caregivers.
It’s also important to teach their caregivers how to recognize and respond to a bleed. Give them an opportunity to ask questions and review essential information on a regular basis.
A medical alert ID provides information about your condition in the case of an emergency when you might not be able to communicate for yourself.
Multiple companies market wearable medical alert IDs, which include:
- medical alert bracelets
- medical alert necklaces
- medical alert watches
Make sure the ID is easy to see and recognize.
You might also carry an emergency information card with details about your condition in your wallet. You can affix a copy of this card to the sun visor of your car as well.
If you have a young child with hemophilia B, consider attaching an emergency information card to their car seat.
When you have hemophilia B, prompt treatment is essential for managing bleeds. Natural disasters and other emergencies can make it harder to get the treatment you need.
Creating an emergency plan, preparing an emergency kit, and communicating information about your condition to others are just a few of the steps that you can take to prepare for a potential emergency.
To find more emergency preparedness tips and tools, visit:
Planning ahead can help you stay safe, even when your usual routine or treatment services are disrupted.