Lilliam Bervis’s first period lasted a month. She gets nosebleeds when she spends too much time in the sun. She has von Willebrand disease, a bleeding disorder common among women. Still, hematologists have told Bervis, now 22, that she couldn’t have a bleeding disorder. After all, she’s a woman.
“You don’t even know what to say,” says Bervis, a Nicaraguan native and Miami resident. “If doctors don’t even get it, how can you expect the general public to understand?”
But Bervis is helping ensure they do. She’s an active member of Project Red Flag, a National Hemophilia Foundation program that spreads the word that women have bleeding disorders and must get tested.
Bervis is joined by several other young women around the country who are also telling people about bleeding disorders in women.
Earning your health badge
When Shelly Mattson, 23, brought dessert to a Milwaukee-area Girl Scouts troop, it was no typical treat: Vanilla pudding represented plasma; dried cranberries represented red blood cells. Marshmallows stood for white blood cells; gummy bears were the platelets. Sprinkles were the factor. Mixing them together, Mattson explained how the different parts of the blood function. To show what happens when factor is missing, she passed a red beverage through a coffee filter. The result: no clotting. In the process, Mattson helped a gaggle of 10-year-olds earn their “Highway to Health” badge.
When Mattson was the same age as the Girl Scouts she met, she was diagnosed with von Willebrand disease—a bleeding disorder that ran rampant through her family, but went largely ignored and untreated. She vowed to always speak up about it.
In the past, Mattson has shared the science behind bleeding disorders with students at her alma maters, explaining how bleeding disorders are passed down genetically and which ones are carried on the sex chromosome. Tests administered after her presentations show that students are getting it and enjoying the activity.
“When people know someone who has a bleeding disorder, or even suspect they know someone who has it, it makes it more real than it would be otherwise,” Mattson says.
Reaching the unreached
Leslie Situ, 21, used to watch her father lie in bed for days, suffering bleeds caused by undiagnosed severe hemophilia A. When her family moved to the US from China, Situ’s father was diagnosed. Then, she discovered she was a carrier.
Project Red Flag allows Situ to tell groups in her Oakland, California, neighborhood that bleeding disorders go beyond hemophilia.
The experience has reinforced her determination. “Sometimes we want to start with huge goals,” Situ says. “But if we make small goals along the way, they’re a lot more feasible and we can move up from there. There’s no limit once we take the first step.”
Bervis, Mattson and Situ became friends while members of the National Hemophilia Foundation’s National Youth Leadership Institute. They have since joined the Project Red Flag Task Force, and the women talk on the phone regularly just to touch base and keep each other on track.
Bervis is starting her Project Red Flag work in what was once her favorite high school class: dance. She’s excited to share her experience with people who may never have heard of von Willebrand disease.
“What I can do, though, is help other women find out about their bleeding disorders so they don’t have to be surprised by it in a terrible situation.”