Knowing and Doing

Better You Know seeks women with undiagnosed bleeding disorders
Author: Emily Rogan

For women with bleeding disorders, a diagnosis can be life-changing. But once they have a healthcare team and a treatment plan, they can live healthier, less stressful and more productive lives. 

Unfortunately, many women living with bleeding disorders remain undiagnosed. They have the characteristic signs of a bleeding disorder—heavy and painful periods, bruising and anemia. What they lack is the relief in knowing the cause and how it can be treated.

“We hear over and over again about women who are living with bleeding disorders and don’t know it,” says Corinne Koenig, MS, manager of education and training for the National Hemophilia Foundation (NHF). 

Betteryouknow.org

NHF’s latest site, betteryouknow.org, is one way to reach outside of the bleeding disorders community to advance awareness and education among undiagnosed people. One part of the site will be directed to men and another, specifically to women. 

Betteryouknow.org is easy to use. It’s packed with important information and valuable resources. In short YouTube videos, women speak candidly about personal experiences with bleeding disorders. Topics include how long it took to be diagnosed, family history, intimacy and day-to-day living. 

First steps to treatment

The ultimate objective of betteryouknow.org is to help women seek proper diagnosis, treatment and care for their symptoms, explains Kate Nammacher, MPH, NHF director of education. Women click the “I Want to Know” assessment tool and answer several questions. The site then directs them to information in a question-and-answer format that explains what to do next. 

“The real work is to go and talk to that first provider who may be able to give them a diagnosis or refer them to a hematologist,” says Nammacher. “There are potentially many steps for these women, so we wanted to keep it a simple, clear action plan.”

The site also provides checklists, bleeding logs and other documents to help women self-assess and seek additional care. Women who take the screening tool and do not meet the criteria for bleeding disorders are also provided with links to other women’s health resources.

Women helping women

This new site also empowers women already diagnosed with bleeding disorders, enabling them to do more than just share their stories. “It’s giving women in our community more options to help other women deal with their symptoms and get treatment in a tangible, easy way,” Nammacher says. Women can send a friend a video, questions to ask a doctor or a menstrual period tracking chart. 

Spreading the word

The website is one part of a broader information campaign, the result of a five-year grant from the Centers for Disease Control and Prevention (CDC), says Koenig. This greater initiative will create partnerships with companies, nonprofits and colleges across the country, reaching more women and directing them to the website. 

Future plans include live webinars targeting healthcare providers not familiar with bleeding disorders. These education courses will teach doctors and nurses about bleeding disorders. When women come in and present with symptoms, their healthcare providers will be better informed. 

Postcards with a checklist of symptoms, general information about bleeding disorders, and the Better You Know logo and website address will be available at doctors’ offices. Local NHF chapters will receive Better You Know toolkits to help them communicate with women.

“We want women out there in the world who are living with bleeding disorders and don’t know it to get a diagnosis and treatment,” says Koenig. “We want them to improve their quality of life.”

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