Resources
Emergency care
What to have ready, what to say, and what the emergency department needs to know.
Most emergency rooms see very few people with a bleeding disorder — some staff will see a handful in an entire career. You will often know more about the condition than the person treating you, which is a strange position to be in at two in the morning.
Call your treatment center first whenever you can. They have the history, they can tell you whether this is an emergency room visit, and they can speak to the hospital directly. Their instructions override anything on this page.
Head injuries are the exception to waiting: treat first, then go, and do not wait for symptoms. Your treatment center gives you their own protocol for this, and theirs is the one to follow.
We are not clinicians and nothing here is medical advice. This is the practical version of what experienced families tell new ones.
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Before you need it
What to have ready
Three things, none of which can be sorted out on the night. Ask your treatment center for the first two at your next appointment, and ask again if it does not come up.
A letter from your treatment center
On their letterhead, stating the diagnosis, the product and the dose. Keep a copy in your bag and a photograph of it on your phone. It turns a long explanation into something you can hand over.
A medical ID, worn on the body
For children especially. NBDF's medical advisory council recommends identification worn on the body rather than carried in a wallet or a bag, with the form changing as a child grows.
MASAC #201 · PDFThe after-hours number, where you will find it
In your phone, in your partner's phone, and with whoever else looks after your children. Not in a drawer, and not only on the fridge.
On the night
At the emergency department
NBDF publishes its emergency guidance twice — once for clinicians, and once for the people in the waiting room. The second one is free, it is two pages, and it exists in Spanish.
- Say you have a bleeding disorder as soon as you arrive, and give them your treatment center's number.
- Ask for treatment early. The guidance is explicit that it should go ahead on clinical suspicion rather than waiting on test results.
- Head injury, severe pain or swelling, an open wound, or signs of internal bleeding are all listed as reasons to treat.
“No one knows your health and your body better than you.” NBDF, Recommendations for Emergency Department Management
Print one and keep it with the letter
For the emergency department
The clinical guideline
The emergency department version is MASAC Document #257, from the medical and scientific advisory council of the National Bleeding Disorders Foundation. It covers triage, assessment and diagnostics, and it is built around treating first. Worth knowing it exists, and worth knowing your hospital can read it free.
The first two are free. The pocket guide is a paid product from Guideline Central, not from Lone Star, and we get nothing from it.
Where to next
Where to next
Your treatment center is the authority on your own care.