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)