When she was in high school, Meghan McDonald, 20, felt she could not tell her private dance instructor about her type 1 von Willebrand disease (VWD). It wasn’t that she was embarrassed by the nosebleeds or muscle bleeds. It was that, for weeks at a time—clad only in a leotard and tights for up to three hours a day, five days a week—she had a heavy period that required frequent bathroom breaks.
McDonald was mortified talking about her period. “No girl wants to be thought of as the one with bad hygiene,” she says. “I was very self-conscious, always worrying if blood was running down my leg or whether I started to leak when I stretched. It made it hard to concentrate.” McDonald, a native of Louisville, Kentucky, is now a junior dance major at Smith College in Northampton, Massachusetts.
[Steps for Living: Normal and Abnormal Periods]
For many girls with bleeding disorders, physical education class, exercise and participating on sports teams are complicated not just by the risk of nosebleeds or joint or muscle bleeds, but also by menstrual cycles that are excessively long, heavy and painful. They can feel self-conscious changing in the school locker room or nervous about being required to wear gym clothes.
“The goal is to manage symptoms so girls aren’t faced with the need to miss school,” says Danielle Nance, MD, a fellow in hemostasis and thrombosis at the Puget Sound Blood Center and University of Washington in Seattle. There are medications that can help control the bleeding so girls don’t have to miss out on normal activities or feel embarrassed.
[Steps for Living: Physical Activity]
Controlling Your Period
A period that lasts for more than seven days, passes clots the size of a quarter, is linked to iron deficiency, or that causes you to bleed through protection more than once every two hours is not under control. Girls who experience these symptoms or miss school because of their periods should work with their hemophilia treatment center (HTC) to find a solution, Nance says. It’s also imperative to check with a gynecologist to rule out any other conditions that might cause excess bleeding.
To get your bleeding under control, the first thing your doctor may prescribe is oral hormone therapy, birth control pills. The hormones regulate bleeding and can often make periods lighter and less frequent. “These medications are known as birth control, but for girls with bleeding disorders, they’re really bleeding control,” says Lisa Perriera, MD, an assistant professor in the Department of Obstetrics and Gynecology at University Hospitals Case Medical Center in Cleveland.
Research is now under way on how the Mirena® hormonal intrauterine device (IUD) can help girls and women with bleeding disorders. The tiny T-shaped plastic device releases levonorgestrel, which, in addition to regulating fertility, regulates the buildup and release of the uterine lining, making women’s periods shorter and lighter. Other hormonal contraceptive formulations give girls the option of having their periods four times a year or even once a year.
Hormonal contraception helped Callie Clark get her bleeding under control. Clark, 19, a Toledo native who attends Miami University in Oxford, Ohio, has moderate to severe type 1 VWD. She is an avid dancer and was a member of her high school’s track team. Her periods sometimes lasted for three weeks, and she would sometimes bleed through her protection every hour.
Clark tried several types of hormonal birth control before settling on NuvaRing®, a flexible, hormone-emitting contraceptive that fits inside the vagina. Now she gets her period every four months. “It’s a godsend,” says Clark. “By the time track season started up, I was in good shape. I didn’t have to miss it ever.”
Other options are medications such as Stimate Nasal Spray,® a highly concentrated form of desmopressin (DDAVP), or Lysteda,™ an oral form of tranexamic acid. For women with type 3 VWD, the most severe type, daily infusions of plasma-derived von Willebrand factor containing factor VIII concentrate are another option.
Creating a 504 Plan at School
Regardless of how well controlled a girl’s bleeding disorder usually is, it’s still a good idea to have a 504 plan for gym class, Nance says. (See “Learn More.”) Under the Rehabilitation Act of 1973, a 504 plan provides accommodations for students who need them. Unlike an Individualized Education Program (IEP), which addresses a variety of disabilities, the 504 may be used for students with medical issues.
[Steps for Living: Sample IEP (.pdf)]
The 504 plan outlines a student’s health condition and treatment. In the case of heavy periods, the plan may spell out that a girl is allowed to leave class frequently to go to the restroom, do alternate exercises in physical education class or opt out of sports when her bleeding is at its worst.
Today, McDonald uses NuvaRing to keep her periods well controlled. She’s outgrown her fear of talking about her period. “If I could go back and redo high school, I would have better communication with my dance instructor and my teachers,” McDonald says. “It’s all about advocating for yourself and voicing what you need so you can continue what you want to do on a daily basis.”
[Steps for Living: Federal Legislation]