Emergency Preparedness

Below is a simplified guide to things you can do to be better prepared for emergencies as well as tips for what to do when an emergency happens. 

General things to keep in mind 

• There is a lot of confusion about bleeding disorders

• You will likely be much more familiar with hemophilia and/or von Willebrand Disease (VWD) than emergency personnel because you live with your disorder every day

• You should not only be informed about your bleeding disorder and its treatment but also be able to communicate that information in the event of an emergency

• It’s better to address minor injuries before they become serious

• You are your (or your family member's) best advocate

Being better prepared

Things to know & do

• Be knowledgeable, even if you rarely have issues related to your bleeding disorder

• Know the 4 “D”s: disorder, drug, dose, doctor

• Teach children the name of their disorder & their address so they can tell emergency personnel (or teach them to point out their medical ID)

• Have a "Go Bag" with a dose of factor and copy of treatment letter and/or first aid kit - make sure friends & family know where it's kept

• Make sure your house number is visible (if applicable)

• Have a family member or friend who can advocate for your care in case you can’t (an emergency contact)

Treatment center/hematologist

• Visit your HTC/hematologist regularly to ensure your treatment protocol is updated as needed

• Consult HTC/hematologist ASAP before medical/dental procedures so they can assess the risk for bleeding and determine the appropriate treatment protocol

• Ask about which ERs carry factor/which ER to go to in the event of an emergency

• Ask for an emergency/travel letter

  • • ER might need to use factor/medication brought in from home (especially if they don’t carry it) & whether patient is authorized to mix own factor

    • Factor to be administered prior to any diagnostic testing, including treatment protocol regarding head injuries (treat with or without symptoms)

• If you don't treat prophylactically, ask about keeping a dose of factor at home

• Order your meds and supplies on time

• Ask about doing a school visit

Making medical information available to those who need it

Click here for a list of suggested information to include in your emergency documents

• Have a medical ID bracelet or necklace (be cautious of overly decorative bracelets that may be overlooked)

• Wallet card/emergency medical information wallet

• Seat belt cover

• Add "ICE" in front of emergency contact names in phone & add medical information app on cell phone (be mindful of accessibility/locked phone)

• Keep hard copies of important information in central location at home (such as on refrigerator) and in car - best to have multiple copies in case you don't get list back following emergency

• Keep digital copies of important information on phone (photos, save as a file, note-taking app) or take photo/scan and email to yourself - save in important folder

• Update medical information regularly (put a reminder on your calendar at regular intervals), especially for children (remember that weight changes affect dosing)

• Have a way for family members/friends to access medical info (file-sharing, have emergency contact keep hard copies, email and save in important folder)

• MedicAlert Advantage: add documentation - can fax to ER

• Get updated emergency letter from HTC/hematologist on regular basis

• Medical information is for your reference as well as to guide emergency personnel

Daycare/school

• Schedule a meeting with nurse and teachers to discuss your child’s needs (ask your HTC if they offer in-school services to educate school nurses and staff)

• Explain that some bleeds are internal and may have no outwardly visible signs; they should trust a child who says he/she may have a bleed

• Provide information about what to do for different types of bleeds (especially with less common and/or more severe bleeds)

• Request that they keep medication (ideally a dose for major bleeding episodes) on hand in case child needs to be taken by ambulance for any reason

• Make sure they know the preferred ER for the child to go to in case of emergency (unless the situation is life-threatening or involves significant trauma)

• Consider getting a 504 plan for special accomodations (especially helpful in child has to miss school due to bleeding-related emergency)

Fire department/rescue squad

• Contact your local fire department or volunteer rescue squad (usually the first responders in rural and suburban areas) and have a meeting with captain/chief - especially helpful for affected children who may not be able to explain their condition

• Ask them to keep a record of your bleeding disorder (and other important medical conditions) and if they can have local dispatch flag your address - include phone number of your HTC/hematologist

Local emergency room

• Schedule a meeting with local ER to discuss bleeding disorder & treatment

• Ask about policy regarding bringing your own factor in

Things to keep in mind about calling 911

• EMS will likely be unfamiliar with bleeding disorders, especially in rural areas with lower call volumes and volunteer rescue squads, but all emergency medical personnel are trained in dealing with uncontrolled bleeding

• Different levels of EMS care

  • • EMT-B (basic): check vitals and provide basic emergency care

    • EMT-A (advance): can typically give basic IV medications and intubate (depending on state & county protocols)

    • EMT-P (paramedic): highest level of pre-hospital care

• Dispatcher will decide if a paramedic is initially necessary, but first responders and EMTs can request a paramedic to the scene if not requested by dispatcher

• Enroute treatments are generally limited, such as giving oxygen/fluids/pain meds, and probably won't be able to administer factor medication (have to follow state & county protocols)

• If emergency is bleeding-related or trauma that could cause bleeding, it's best to ask EMS to transport patient to closest hospital that carries factor, but patients with a life-threatening condition will likely be taken to closest ER and those with significant trauma will be taken to a trauma center

When you have to call 911

Set the scene for success

• Try to stay calm – the sight of blood can make people uncomfortable

• Make sure the scene is safe

• Unlock doors & put pets away

• Clear a path for EMS (clutter, cars in driveway, shovel snow)

• Turn on outside light at night

• Send someone to let EMS know patient location

• Make a plan for everyone else (kids, pets, etc)

Helping the patient

• Don't move patient if call is due to trauma

• Help them stay calm & keep talking to them

• Have one person stay with the patient at all times & have them watch for worsening symptoms

911 dispatch

• First things dispatcher will ask are the nature & address of the emergency (important to know address/location)

• Tell the dispatcher that the person has a bleeding disorder (“bleeder”) and which local ER they need to be taken to if they need if emergency is bleeding-related or could result in bleeding

• Give dispatch all relevant information & answer their questions to the best of your ability - dispatchers have specific protocol of questions to ask and instructions to follow - answers will help dispatcher decide what resources are needed

• Follow any instructions the dispatcher gives you - can talk you through basic life-saving techniques

Call the treatment center/hematologist

• Notify the treatment center/hematologist first so he/she can call ahead and prepare ER

• Make sure both you and HTC/hematologist are clear on which ER you are going to

• Best for HTC to call the shots about course of treatment - some ER providers may not see connection between certain injuries and risk of bleeding

Emergency medical services (EMS) on scene

• Inform EMS about bleeding disorder and make connection between injury/symptoms & bleeding disorders - repeat “I have a bleeding disorder” or “I’m a bleeder” at each level of care

• Let first responders know about bleeding disorder and need to go to specific ER (if applicable) - provide dose of factor & treatment letter

Things to gather

• Provide list of medical conditions, medications, allergies - write a quick list if you don't have one

• grab anything that needs to go with the patient

• Take your medication with you

• Find advance directives (if applicable)