Many people with hemophilia, von Willebrand disease (vWD), and other bleeding disorders don’t realize their condition is serious until a minor dental or medical procedure causes a major bleed. Women with hemophilia may have bleeding symptoms of mild hemophilia. If unmanaged, women with higher factor levels or mild forms of vWD can have dangerous bleeds from childbirth, injuries and surgery.
One out of three women with hemophilia will have bleeding symptoms of mild hemophilia.
Start with these steps:
- Understand what kinds of procedures put you at greater risk and the kind of care you’ll need to manage bleeds.
- Work with all your health care providers and the CVS Specialty Hemophilia CareTeam. Don’t risk prolonged or serious bleeds.
- Talk to your health care team about your bleeding disorder, especially before having medical or dental procedures.
Understand the risks.
The two most common bleeding disorders are vWD and hemophilia. vWD affects about the same number of men and women. Bleeding risk depends on your type of vWD. Most people who suffer from vWD have type 1, a mild form that doesn’t usually cause life-threatening bleeds. But all people with vWD may need treatment for bleeds from injuries, tooth extractions, childbirth or surgery.
Carriers and women with hemophilia don’t usually have sudden, unexplained bleeds (spontaneous bleeds). Bleeding mostly occurs during or after:
- Pregnancy termination
- Dental work
Even minor surgeries can result in prolonged bleeds if not prevented or treated properly.
Remember, you may be at risk of serious bleeding after an accident or major injury and even minor surgeries can result in prolonged bleeds if not prevented or treated properly. This is true even if your bleeding disorder is mild.
Get to know the bleed treatment options.
Treatment for vWD is based on the type and severity. Most cases are mild, but treatment may be needed for tooth extractions, childbirth, injuries or surgeries. Carriers and women with hemophilia are treated for surgery or injury-related bleeds the same as people with moderate to severe hemophilia. Options for both disorders include:
- Antifibrinolytic agents. These medications keep blood clots from breaking down in body parts, including the mouth. They are typically used to manage bleeding during minor surgeries or dental work.
- Desmopressin (DDAVP®). DDAVP is a synthetic hormone that may help manage bleeding in an emergency or during surgery. It can be injected into a vein (intravenously) or under the skin (subcutaneously), or given as a nasal spray. DDAVP doesn’t work for everyone, including women with hemophilia B or some people with type 2 vWD. It should also be avoided in people with certain health problems.
- Factor concentrates. Clotting factor infusions (factor type depends on bleeding disorder) may be needed after serious injury or if the bleeding risk is high, such as before or after a major surgery.
- Fibrin glue. Fibrin glue is a medication that’s placed directly on a wound to stop the bleeding. It’s used only for people with vWD.
Talk to your health care providers before any procedure.
All of your health care providers need to know about your bleeding disorder and how to prepare for bleeds:
- Tell every doctor, dentist or surgeon you see about your bleeding disorder. Even small, routine surgeries can cause prolonged bleeding.
- Tell your specialty pharmacy and medical specialist if you are having any type of procedure. They can work with your doctor to help ensure you get the right care.
Work with your team every day.
You need regular medical care even if your bleeding disorder isn’t severe. Even minor injuries can turn into major problems if you ignore them. To take care of your bleeding disorder and overall health, you should:
- Visit a bleeding-disorder specialist (hematologist), primary care doctor and other health care providers on a regular basis.
- Know your exact diagnosis and/or baseline factor levels.
- Learn how to best take care of your bleeding disorder.
- Wear a medical identification tag or bracelet and carry information about your bleeding disorder in case of an emergency.
Visit these websites to learn more about your bleeding disorder:
Victory for Women with Blood Disorders
National Hemophilia Foundation
HEMAWARE, The Bleeding Disorder Magazine
Hemophilia Federation of America
World Federation of Hemophilia