The emergency room can be an overwhelming place in the best of circumstances. But women diagnosed with von Willebrand disease (VWD) face unique challenges when they have a medical emergency, because too few medical personnel are familiar with the bleeding disorder.
Nobody wants to end up in the ER. But just in case, it helps to have a plan so you can be your own best advocate, whether you’re dealing with an emergency related to your VWD or one caused by an accident or illness.
Obstacles to care
Ideally, every ER would include staff members knowledgeable about bleeding disorders, but that’s not always the case. Many hospital emergency team personnel don’t regularly treat patients with VWD.
“You have to count on the fact that doctors and nurses in the ER won’t have any idea about VWD and have had little if any training about it,” says Jessica Graham, a VWD advocate who educates and trains women and men on the subject and lives with the disease herself.
Three Steps to Ensure You Get the Best Care for Your VWD
Keep comprehensive medical information handy
Have your medical history and personal information in one document, and always keep it with you. Store digital copies on your phone and computer and hard copies in multiple places, says Graham.
VWD Medical Information Checklist
Include the following information:
- Name, address, phone number and emergency contact
- Proper name of bleeding disorder
- Clotting factor affected
- Hemophilia treatment center (HTC) phone number and emergency contact
- Past bleeds
- Details of ongoing treatments, and measures for acute menstrual bleeding or in case of accident or emergency surgery
- Physician’s and ob/gyn’s names and numbers
The National Hemophilia Foundation (NHF) recommends everyone with a bleeding disorder also wear medical ID, such as a MedicAlert® bracelet or necklace.
Establish a relationship with an HTC or your hematologist
If you’re able, visit your local HTC regularly so the team there gets to know you and your medical condition. HTC staff can advise you on proper protocols for treatment in general and in the event of an emergency.
If you, a friend or a family member can notify the HTC as you’re heading to the ER, an HTC staff member can call ahead and provide information to hospital staff so they’re prepared when you arrive. If you run into problems at the ER, having the nurse or hematologist from the HTC speak to the hospital personnel—provider to provider—can be crucial, says Graham.
If using the HTC isn’t an option, your hematologist can provide these same services.
Tell ER staff about your VWD
Women sometimes worry about insulting medical professionals by questioning them, Graham says, but you can and should be assertive to get what you need in the ER. Remember, while ER staff members do their best, it’s likely you know more than they do about your disorder.
Don’t be afraid to provide information critical to your care. The best strategy is to make sure you know as much as possible about your disease, treatment plan, the medicines you take and any other conditions or medical issues you have.
• Steps for Living: When to Go to the Emergency Room
• Search the Centers for Disease Control and Prevention’s HTC Directory to locate an HTC near you
• Read NHF’s Medical and Scientific Advisory Council Recommendation #252, “Guidelines for Emergency Department Management of Individuals with Hemophilia”
• Read NHF’s Medical and Scientific Advisory Council Recommendation #201 on the “Use of Emergency Medical Identification Devices for Children”