WHAT IS A WWBD?

A WWBD is the abbreviation for Woman With a Bleeding Disorder. She is any race, from any culture, and any age. She was born with the disorder, but often wasn't diagnosed until in her 20's or later due to the fact that many medical professionals are still unaware that women can have hereditary bleeding disorders and need to be adequately treated for them. We get used to hearing, "Women are supposed to bleed."

Her bleeding can be termed mild, moderate, or severe; but many WWBDs experience episodic, severe bleeding, which can seriously impact their physical and emotional well-being. Undiagnosed and untreated bleeding disorders can cause complications including unnecessary surgeries, inability to bear children, possibilities of co-infection from blood products, joint damage due to undiagnosed bleeding into the joints, and severe anemia. The emotional trauma of dealing with years of misdiagnosis can include depression, anxiety, and feelings of anger, helplessness, and isolation.

WWBDs need to become educated and empowered about their condition. They need to be seen and treated at Hemophilia Treatment Centers and also often educate their other providers about their disorder. Every physician and treatment specialist (including dentists, nurses, naturopaths, etc.) that she has should be aware of her disorder, no exceptions. The possibility of a WWBD bleeding out during a surgery or a motor vehicle accident because of lack of knowledge is very real.

It's important to remember that even though many WWBDs present with the most common symptom...severe menorrhagia (heavy and lengthy periods), a WWBD is a hereditary, HEMATOLOGICAL disorder, not necessarily a gynecological one; though it may manifest itself in gynecological symptoms in a woman.

A woman with a bleeding disorder (WWBD) can have any type of bleeding disorder that a man can have, including various forms of hemophilia.

MOST COMMON BLEEDING DISORDERS

VWD: Von Willebrand disease, which may affect 1-3% of the population but is rarely diagnosed. VWD affects men and women equally, but women are more commonly diagnosed due to abnormal gynecological bleeding. Symptoms can range from mild to severe and include, but are not limited to: bleeding from the nose and mouth, the mucosal membranes, menorrhagia (extremely heavy and/or lengthy periods), and internal organ and joint bleeding. Menstrual blood loss volume of over 3 tablespoons total, or a period lasting longer than a week, might be a symptom. People with VWD may have the same symptoms as people with hemophilia. Treatment may include a nasal spray, and sometimes includes infused clotting factor replacement.

F-VIII (Factor 8, Hemophilia A) deficiency: Any woman with a circulating clotting factor less than 50% of normal F-VIII is considered Factor-VIII deficient and hemophiliac. She could be the mother or daughter of a F-VIII deficient hemophiliac, or the gene may have spontaneously mutated in her with no family history. Symptoms generally range from mild to moderate, but some women who are F-VIII deficient can present clinically with severe bleeding, even when they have been termed "mild." It's important for any woman who is factor deficient to seek treatment at a Hemophilia Treatment Center (HTC) and explain all bleeding tendencies to her doctor. Symptoms can include, but are not limited to: bleeding during dental procedures and surgery, severe menorrhagia, joint bleeding, organ bleeding, and generally the same bleeding associated with Hemophilia A in a male. Bleeding symptoms should be treated in a woman who is deficient in F-VIII. Bleeding tendencies and presentations in women with F-VIII hemophilia may differ from those in men with F-VIII hemophilia, yet may, in fact, need to be treated the same.

F-IX (Factor 9, Hemophilia B) deficiency: Any woman with a circulating clotting factor of less than 50% of F-IX is considered F-IX deficient and hemophiliac. She may be a mother or daughter of a hemophiliac F-IX male. Or, her gene may have been a spontaneous mutation with no family history. Any woman who has bleeding symptoms or tendencies, a family history, and/or has been found to be below normal (below 50%) in circulating clotting factor IX, may be a woman with a bleeding disorder, hemophiliac, and should be properly treated for bleeding symptoms as noted above in F-VIII deficiency. Everything as stated for F-VIII deficiency also applies to F-IX.

LESS COMMON BLEEDING DISORDERS (rare factor deficient hemophilias)

Factors I, II, V, VII, X, XI, XII and XIII deficiencies are rare. Some are extremely rare. Anyone with less than 50% of circulating clotting factor in any of these factors is deficient. Like the above more commonly known factor deficiencies of F-VIII and IX, bleeding tendencies and symptoms are similar and often are compounded by the inability of the medical community to adequately treat the patient, because treatment protocols simply do not exist for many of these rare deficiencies.

Various methods are used to treat rare factor deficiencies in women, often including infusion of replacement clotting factor. It's most important here, as it is with any bleeding disorder, that a woman becomes proactive in her health care and treatment.

RARE PLATELET DISORDERS

Ehlers-Danlos Syndrome and Bernard-Soullier Syndrome (BSS) are just two of the rare platelet bleeding disorders for which diagnosis and treatment are difficult. Symptoms can often be severe and quite difficult to treat. It's critical that any woman diagnosed with a bleeding disorder or platelet disorder, whether mild, moderate or severe, rare or more common, becomes involved in her own treatment.

If you experience any of the symptoms of a woman with a bleeding disorder (WWBD), such as (but not limited to): severe menorrhagia (heavy gynecological bleeding), recurrent nosebleeds, mouth (gum, throat, mucosal tissue) bleeding, gastrointestinal bleeding, organ bleeding, joint bleeding, bruising (soft tissue bleeding), or any other unexplained and recurrent bleeding:

• Seek diagnosis and treatment from a medical professional, preferably at a Hemophilia Treatment Center (HTC).

• Consult a hematologist (bleeding disorder specialist) for further advice, or if a diagnosis is incomplete. Make sure all of your medical providers (doctors, nurses, dentists, etc.) are aware of your condition.

• Learn everything you can about your bleeding disorder; stay informed and educated. Teach everyone around you (family, friends, co-workers) about your condition. You can't have too many advocates!

• Follow your treatment protocols and guidelines; but if it isn't working, tell your doctor. Ask how you can work together to treat your bleeds quickly and adequately.

• Write down your questions and take them with you to the doctor. Make sure they're addressed before you leave the office. Ask what to do and who to call when you have a bleed that can't be self-treated.

• Stay connected to the bleeding disorders community and to other WWBDs. Get informed, educated, and involved in your health care.

• Become part of the solution, not part of the problem. Find others like yourself to network with. Ask how they're treating, what's working, what's new. Be proactive!

For more information, visit:

www.4woman.gov/faq/bleed.htm

The information provided in this website in no way replaces the information and advice provided by a health care professional. A doctor, nurse, or Hemophilia Treatment Center (HTC) should be contacted regarding the diagnosis and treatment of any medical condition.