Women with Bleeding Disorders
Women can and do have bleeding disorders. Despite long-standing misconceptions about bleeding disorders in women, women’s voices and experiences are now being taken more seriously.
Latest News and Information
HANDI Highlights Resources for Historically Underserved Population
October HANDI Highlights is dedicated to an historically underserved group within the inherited bleeding disorders community – women, girls, and people with the propensity to menstruate (WGPPM).
Charting New Waters in Women’s Bleeding Disorders Care (September 2024)
A session led by Dawn Rotellini at the National Bleeding Disorders Conference this past summer, spotlighted inclusive care for women with bleeding disorders, introducing the WGPPM concept and emphasizing access to treatment, education, and stigma reduction as key areas for advancing women’s health.
Learn About Clinical Issues in Women with Bleeding Disorders (June 2024)
The National Bleeding Disorders Foundation (NBDF) is pleased to announce a series of educational videos on clinical issues in women, girls, and people with the propensity to menstruate (WGPPM). They were created for physicians, physician assistants, nurse practitioners, and other clinicians who treat patients with bleeding disorders, including von Willebrand disease (VWD), hemophilia A or hemophilia B. We are sharing this information for those individuals who may have missed our earlier announcement. Read more.
Yale Researchers Explore the Possibilities of von Willebrand Factor (January 2024)
Researchers at the Yale School of Medicine have been studying the key clotting protein von Willebrand factor (VWF), to shed light on the processes by which it is stored and released in response to an injury. As VWF is the deficient protein in many cases von Willebrand disease (VWD), a better understanding of it could ultimately lead to enhanced clinical outcomes for patients. Read more.
Women with Bleeding Disorders and Other Medical Concerns
(December 2023)
Women who have von Willebrand disease or hemophilia are not at risk for other female medical problems, but two common disorders in women, polycystic ovary syndrome and endometriosis, can cause additional concerns and pain, and need proper diagnosis and treatment. An excellent article in HemAware covers this interesting and vital topic. Read here.
Concerns for Women with Polycystic Ovary Syndrome and Endometriosis (December 2023)
Women with bleeding disorders and other medical concerns, or who have von Willebrand disease or hemophilia, are not necessarily at risk for other female medical problems. But two common disorders in women, polycystic ovary syndrome and endometriosis, can cause additional concerns and pain, and need proper diagnosis and treatment. An excellent article in HemAware covers this interesting and vital topic. Read here.
Gynecologists Have Significant Part to Play in Shrinking Diagnostic Gaps (September 2023)
A new commentary, “Closing the Diagnostic Gap in Adolescents and Young Adult Women with Bleeding Disorders,” published in the August issue of the journal Obstetrics & Gynecology is a call to maximize the role of gynecologists to achieve early diagnoses in this underserved population.
HFA’s Resource for Blood Sisters and Menstruators
The Hemophilia Federation of America (HFA) launched a valuable NEW toolkit, designed by Blood Sisters for Blood Sisters and menstruators. This resource provides digital and printable tracking tools for women, girls, people with the potential to menstruate, people with bleeding disorders, and those who have not yet been diagnosed.
Safeguarding an Essential Treatment for Heavy Periods – What Contraception Bans Would Mean for the Bleeding Disorders Community (December 2022)
Symptoms of a Bleeding Disorder
You may have a bleeding disorder if you have one or more of the following symptoms:
- Heavy menstrual periods
- Bleeding for more than 7 days, from the time it began until it stopped
- Flooding or gushing of blood, limiting daily activities such as work, exercise or social activities
- Passing clots that are bigger than a quarter
- Changing tampon and/or pad every 2 hours or less on heaviest day
- Being told you are “low in iron” or have anemia
- Having bleeding symptoms and someone in your family has a bleeding disorder, such as von Willebrand disease, or a clotting factor deficiency, such as hemophilia
- Heavy bleeding from dental surgery, other surgery, or childbirth.
- Frequent nose bleeds that last longer than 10 minutes
- Bleeding from cuts lasting longer than 5 minutes
- Easy bruising (weekly, raised and larger than a quarter)
If you have one or more of these symptoms, talk to your doctor or other healthcare professional.
vonWillebrand (VWD)
The most common bleeding disorder in women is von Willebrand (VWD). Although there are several types of VWD, people with the most common type produce less than normal amounts of VWD factor. In other (less common) forms, either no factor is made or the factor is made but does not work properly. Here are some signs and symptoms women with a bleeding disorders may experience?
- Heavy bleeding during monthly periods (menorrhagia)
- Unusual bleeding after an injury or surgery
- Bleeding from small cuts that starts and stops over several hours
- Frequent prolonged nosebleeds
- Unusual bleeding from the mouth or gums or after a tooth extraction
Conditions causing minor bleeding may require no treatment. However, preventing or treating more severe bleeding problems, such as heavy periods or excessive bleeding during dental or surgical procedures, requires the use of medications. Healthcare providers, who are experts in treating bleeding disorders,, can help find the best treatment and management options for you.
Where can I find additional information?
National Hemophilia Foundation Victory for Women Program
Note: Content adapted from Bleeding Disorders in Women, CDC
Other Factor Deficiencies
Women and girls can also have mild hemophilia. Women who carry the gene for hemophilia can have factor levels that are low, resulting in a diagnosis of mild hemophilia. Sometimes these women are referred to as “symptomatic carriers.” There are many rare factor disorders (link), including factor I, II, VI, VII, XI and XIII deficiency that affect men and women equally. Learn more.
Avoid Undiagnosed and Untreated Bleeding Disorders
Although men and women with bleeding disorders have similar symptoms, such as bleeds into joints and tissues, women can experience added complications during menstruation, pregnancy, labor and delivery. Some doctors are not familiar with bleeding disorders in women, resulting in many of women going undiagnosed or misdiagnosed. Women with undiagnosed and untreated bleeding disorders risk serious complications. Learn about NHF’s Victory for Women website, which has information and resources specific to women.
Do you think you may have a bleeding disorder?
If you have symptoms of a bleeding disorder, it is important to get a proper diagnosis and treatment from a specialist, called a hematologist. In the U.S., there is a network of hemophilia treatment centers (HTCs) that provide comprehensive care to patients with hemophilia and other bleeding disorders, and even some that have specialty services for women and girls. HANDI, our information resource center, can provide information on bleeding disorders and the nearest HTC. Find an HTC near you.
NHF’s Blood Sisterhood Program
The Blood Sisterhood program was established to help meet the needs of women with bleeding disorders. A main component of the program is a peer support network made up of women around the United States and Puerto Rico. (Si- se habla español!) By connecting online and in-person, women with bleeding disorders can support each other on their journey through diagnosis, treatment, and day to day living. Blood Sisterhood provides education, promotes healthy practices, and engages women in developing strong self-advocacy skills. Through furthering the conversation among women and providers, we seek better health outcomes and a better quality of life for women with bleeding disorders.
When you enroll in Blood Sisterhood, a program designed by the Hemophilia Federation of America (HFA), you get connected with a community of more than 500 women with bleeding disorders. In addition to this peer support network, access to educational resources and events, you will also receive a special Blood Sisterhood Welcome Kit!
Learn more about Blood Sisterhood Resources and access a multitude of resources for women!
Source(s): Center for Disease Control (CDC), National Hemophilia Foundation