Supporting Women’s Advocacy and Networking (SWAN)Wellness and Empowerment Tools for Women With Bleeding Disorders
We recognize the impact a bleeding disorder has on a woman’s quality of life and the need for support and resources. Our SWAN program was created especially for women who have congenital bleeding disorders or who are carriers of hemophilia.
learn more about SWAN or to join the program
How Do I Know If I Have a Bleeding Disorder?
Diagnosing a bleeding disorder is not always easy. To find out if you have a bleeding disorder, it’s best to speak with your medical provider about your symptoms. Be sure to discuss your entire health history — especially any known bleeding disorders in your personal and family background.
There are also tests that can help determine whether you have a bleeding disorder, but testing for bleeding disorders can be a complex process. Work with your doctor to help determine which laboratory tests to order, and remember to:
- Coordinate laboratory tests with your menstrual cycle
- Discuss any medications you are currently taking
- Ask any questions you have about the testing process and when you can expect the results
Once you are properly diagnosed, you and your medical team can create a personalized treatment plan.
Symptoms of a Bleeding Disorder in Women
Women living with bleeding disorders often face unique challenges that can significantly impact their quality of life.
The most common symptom women experience is heavy menstrual bleeding (HMB), or “menorrhagia.” HMB is usually defined as a week or more of heavy bleeding, frequently with large blood clots. It is estimated that one in 10 women with HMB have an inherited bleeding disorder.
In addition to HMB, women with bleeding disorders might experience:
- Anemia or low hemoglobin
- Bleeding gums
- Bloody noses
- Bruising easily
- Hemorrhagic ovarian cysts
- Increased miscarriages early in pregnancy
- Painful or swollen joints
- Painful periods
- Post-partum hemorrhaging
- Post-surgical bleeding
Women and Bleeding Disorders
The most common inherited bleeding disorder is von Willebrand disease, which affects 1–2% of women; however, women who carry the gene for hemophilia A or B might also experience bleeding disorder symptoms.
In the past, these women were referred to as “symptomatic carriers,” but in recent years these patients have been classified as having mild, moderate, or severe hemophilia. Women with other rare bleeding disorders (such as FXIII or FX) or platelet disorders might also suffer from bleeding issues that require medical intervention and treatment.
The Diplomat SWAN Program
Living with a bleeding disorder can be difficult and isolating, but our SWAN program and bleeding disorder team is here to help. We want to empower you to either get tested for a bleeding disorder, or get the treatment you need. The SWAN program provides you with access to knowledge, resources, healthcare, and support.
Through the SWAN program, we build an individualized care plan for each of our female patients and offer these specialized resources:
- Connection with other women with bleeding disorders for support and networking
- Our StrapWrap® accessory, which attaches to seat belts, backpacks, car visors, and more to inform emergency responders of your bleeding disorder and emergency contacts
- Nurse educators specializing in women with bleeding disorders
- School-care coordination
- Medication-administration logs and MyFactor® smartphone app
- Personalized bleeding disorder education and resources for patients, families, and schools
- Access to specialized nonprofit and industry resources, such as educational dinners, workshops for all ages, and sponsored support-group weekends
Bleeding Health HistoryThis tool can help you and your team better understand your health and bleeding history.
If you have unexplained bleeding you may have an undiagnosed bleeding disorder. This tool can assist in tracking and explaining your bleeding symptoms. Bleeding disorders are often genetic, so be sure to let your healthcare provider know about unexplained or suspicious bleeding in your family history.Download