Symptoms of a bleeding disorder can feel frightening and isolating. The National Hemophilia Foundation (NHF) intends to change that experience by providing two websites for women. With them, NHF will raise awareness for bleeding disorders and give women a place to connect with others.
Obstacles and opportunities
Women can face several challenges on the road to a diagnosis. Because bleeding disorders often run in families, many women don’t even recognize something is off. “We’ve heard many times, ‘Well, I didn’t know that a super heavy period that lasted eight days wasn’t normal, because my mom had that, too,’” says Corinne Koenig, MA, NHF manager of education and training.
Even if they do suspect a problem, women often find diagnosis can be difficult. That’s because the tests for von Willebrand disease, for example, can be skewed by stress, exercise and whether you have an active infection or inflammation. Some tests may have to be repeated. Further, the tests have to be conducted by a specialized lab.
But an accurate and timely diagnosis is crucial. “Women with bleeding disorders are at risk for bleeding with childbirth or surgical procedures,” says Chris Guelcher, MS, APRN, PPCNP-BC, a member of the NHF Women with Bleeding Disorders working group and a pediatric nurse practitioner. Both of those require foreknowledge of the specific bleeding disorder and a treatment plan, she adds.
There are also important quality-of-life issues. For example, iron deficiency from blood loss, which can lead to anemia, can inhibit your ability to participate in activities. “If you’re constantly exhausted, having headaches and dizziness, you’re going to be less productive,” says Guelcher.
NEW: Better You Know Website
NHF’s new site, betteryouknow.org, targets individuals who are symptomatic but haven’t yet been diagnosed. It uses a screening tool initially developed by Claire S. Philipp, MD, and Ambarina Faiz, MD, at the University of Medicine and Dentistry of New Jersey in Newark. The tool has been validated through a study on women with menorrhagia (heavy menstrual bleeding) conducted in conjunction with six US medical centers and the US Centers for Disease Control and Prevention.
After users answer a series of questions, the screening tool tells them if they may be at risk for a bleeding disorder. The website also offers information on how to find the right healthcare provider and how to best prepare for a healthcare appointment. Further, there is general information on bleeding disorders and how to manage symptoms.
Material on the site can serve as a good starting point for talking with your doctor. “This site will fill in the gap for women who have symptoms but aren’t getting the information, diagnosis or care they need,” says Kate Nammacher, MPH, NHF director of education.
RENEWED: Victory for Women Website
The journey to getting a diagnosis can be long and frustrating. Afterward, questions may abound, such as: How will this condition affect my life? What do I do? How do I cope? To help answer those questions, NHF has refurbished and relaunched its Victory for Women website, victoryforwomen.org.
Previously, Victory for Women existed as an informational site. But anecdotal feedback from women in the community and from a 2015 NHF survey revealed that women wanted a resource that lets them connect with others. “NHF already had a lot of other women’s information resources on hemophilia.org and stepsforliving.hemophilia.org, but nowhere on our sites to connect,” says Nammacher.
Results from the survey and guidance from women with bleeding disorders helped establish the content on the refreshed website. It will now feature users’ stories, poems, artwork and photography. NHF will also launch a podcast series. Each quarter, the site will highlight a woman who has made a contribution to the community. In addition, an “Ask the Expert” section allows women to post questions, which NHF will direct to experts, who will then post the answers.
Women can upload pictures of their art, podcasts, stories and videos, connecting with other women in the bleeding disorders community. “We want this to be a place where women feel they’re connected to others who know what they’re going through, whether they have a chapter right down the street or 10 hours away,” says Koenig.
“It’s going to be a space for women to be creative, to tell their stories and to share life’s fun moments,” says Nammacher.
Both sites offer reliable information and a supportive network to help you on your own path to victory.