When Shannon Phelps was 6 months old, her mother took her to the doctor after noticing excessive bruising all over her little body. Next thing Phelps’ family knew, she was whisked away by Child Protective Services for suspected abuse in the home. It took a look by another, wiser doctor to determine that Phelps suffered from Von Willebrand disease.
Similar to hemophilia, Von Willebrand affects about 1 percent of the population. The disease is a deficiency of a blood clotting protein known as the Von Willebrand Factor, which is responsible for preventing skin and mucous membranes from bleeding. In its absence, the lining of the nose, mouth, intestines, vagina and uterus commonly bleed, as is the case with Von Willebrand patients.
Now a 20 year old nursing student at Tidewater Community College, Phelps hopes to one day become a doctor, perhaps a hematologist:
“I want to be able to help people like myself one day.”
Phelps volunteers for the Virginia Hemophilia Foundation, a non-profit group comprised of advocates, educators and community members. Because of her childcare experience, Phelps will often babysit members’ children during conferences and retreats.
“I like helping everyone out,” Phelps says. “I enjoy the kids, and they can learn more about blood disorders when they’re with me. I also like meeting other people my age at foundation events. They understand everything you’re going through because they’ve gone through the same.”
During high school, Phelps faced several challenges due to her condition. Serious internal joint bleeding required her to get surgery on her ankle. On more than one occasion, she was forced to sit out from Color Guard.
“I’ve had some really, really bad bloody noses,” Phelps explains. “Sometimes I’ll get a paper cut and bleed, bleed, bleed. Or I’ll scratch a bug bite and not think about it.”
Since 1975, VHF has provided “various forms of personal, medical, and financial support” to patients and their families as part of their mission to address “the needs of those impacted by a bleeding disorder.”
This includes several programs and services, such as the family assistance program, the Lyman Fisher Scholarship, Camp Youngblood and more. The family assistance program helps cover expenses associated with prevention and treatment, whether that means transportation to a hospital or procuring medic alert bracelets. The Lyman Fisher Scholarship is an annual $2,000 scholarship for chapter participants who are residents of Virginia or plan to attend a Virginia school. Camp Youngblood is a one-week camp open to children with bleeding disorders and their siblings, as well as the children of members with bleeding disorders
Yet even with her friends at the foundation, Phelps continues to face challenges in everyday life. Apart from the obvious physical ailments, Phelps sometimes encounters bullying or even harmless ignorance about Von Willebrand disease. Phelps, who works at a bar, talked about how, when joking around, co-workers single her out. They refrain from play fighting with her, saying things like, “You bruise like a banana.”
“Once people know about my disorder, they tend to think of my disorder first,” Phelps said. “But my best friend and my boyfriend treat me like I’m a normal person.”