It’s estimated that up to 1% of women in the US (roughly 1.6 million) may have a bleeding disorder. Yet many women suffer with symptoms without even knowing a bleeding disorder could be the cause. Historically, women and girls have struggled to obtain accurate and timely diagnoses of their conditions and receive proper treatment, putting them at risk for unnecessary medical procedures, heavy bleeding from surgery, dental procedures, and during their periods, as well as complications during pregnancy and childbirth.
Thankfully, more and more resources are now available for girls and women—and for healthcare providers as well—so that they can learn about bleeding disorders and take better control of their health. Below are some good places to start, and continue, learning.
Better You Know
The first step in getting treated for a bleeding disorder is knowing that you have one. NHF created the Better You Know website so women (and men) with bleeding symptoms but who haven’t been diagnosed can determine if they’re at risk for a bleeding disorder. After a short online survey, the site provides those who are deemed at risk actionable next steps. Better You Know also contains essential educational information, including how women should prepare for visits to a healthcare provider, questions to ask at an appointment, and a detailed guide for women about lab tests, screening tools and health exams.
Steps for Living: Bleeding Disorders in Women
The National Hemophilia Foundation’s (NHF) online resource for learning about bleeding disorders throughout the life stages, Steps for Living includes a section devoted to women. A good introduction, it includes common signs of bleeding disorders in women, including what women should look for that might indicate abnormal periods are due to a bleeding disorder.
Victory for Women
Launched in 2016, the Victory for Women website is part of NHF’s Victory for Women initiative, which raises awareness of women’s bleeding disorders and provides support for women to better manage their health and improve their quality of life. The website is a place where women and girls can share their stories, connect with and learn from one another, and help build the women’s bleeding disorders community.
Women’s Retreats and Conferences
Each year hundreds of women and girls affected by bleeding disorders gather at retreats and conferences across the country. These events are invaluable opportunities for women to learn from experts and share information with one another, all in a supportive—and fun—environment. One event to consider attending is Hemophilia Foundation of Michigan’s annual National Conference for Women with Hemophilia. But also check if your chapter organizes a women’s retreat or similar event. If it doesn’t, why not offer to help organize one?
Foundation for Women & Girls with Blood Disorders: Clinics and Services Directory
The Foundation for Women & Girls with Blood Disorders manages an online directory of healthcare facilities that offer specialized services for women and adolescent girls with blood disorders. Services offered at these locations vary, but all have staff specially equipped to manage women’s bleeding disorders.