Becky, whose daughter Elizabeth, 18, has severe hemophilia, found herself in the role of advocate for all women who are symptomatic carriers of hemophilia B. “I think women with bleeding disorders have come to the forefront more, and awareness is continuing to grow.”
She talks specifically about the struggle that women who are symptomatic carriers go through when it comes to diagnosis and treatment. “The more women I talk to who are symptomatic carriers, the more I hear that they just want to be labeled as having hemophilia,” she says. “If they were male and they had their levels drawn and they were at 17%, they would be labeled as having hemophilia, but since they’re a woman, they’re just being labeled as a symptomatic carrier, and they don’t get access to factor like they should. It’s still a struggle for a lot of women out there.”
Because of this, she describes Elizabeth’s diagnosis of severe hemophilia as fortunate. “So many of these women who are mild to moderate don’t get the treatment, and they really suffer. So for Elizabeth to be able to have factor in her refrigerator at her disposal anytime she needs it, hemophilia really isn’t as big of an obstacle as it is for some of these other women.”
Becky uses her career as a teacher to help others within the hemophilia community. She continues to stay involved in events to help educate others. “I’ve really focused on education of others. When we go to some of the meetings, I love talking to the kids and the parents, especially the parents of the younger kids. Their future is unsure, and they’re not quite sure what they’re up against and to just help relieve some of their fears, that’s the role I really like, because I so appreciated it when I was in their shoes. To see a normal teenager and go ‘Okay, he’s fine, he’s normal, he’s playing around just like everyone else,’ that was really reassuring to me when she was a toddler.”
Becky VanSant is a mother of three daughters ages 7, 10, and 14. Elizabeth, the 14-year-old, has severe hemophilia B and is the first person with hemophilia B in the family. Becky describes this as, “Elizabeth’s translocation is on the long arm of her X chromosome and her 14th chromosome; her X has a piece of her 14th, and her 14th has an equal size piece of her X.” Becky and her husband, Jim, have been very proactive in seeking medical help that will be important to others as well in the future.
When Elizabeth was 3 months of age, she had a bruise on her chest. When Becky took her to the physician to have it checked, he did a finger-prick blood test. The bleeding from this test did not stop. In further analysis, the physician noted that Elizabeth’s FIX level was very low. Not only was the physician surprised at this, but Becky and her husband found this very difficult to believe because Elizabeth did not fit the profile. There was no information about girls being diagnosed with hemophilia B. Becky and Jim not only had difficulty accepting this diagnosis, but also found it difficult to explain to others that she did indeed have hemophilia B, including a nurse they met before Elizabeth’s surgery who was in the surgery waiting area. The nurse argued for some time with Becky that this was impossible. She was a tough sell and hard to convince that Elizabeth had hemophilia. This reaction was because most of the literature and teaching at the time centered around boys, not girls with hemophilia B.
“When we began to go to an HTC, we found that the education about the genetics and the cause of Elizabeth’s hemophilia helped us, and we started to get involved. The support from the HTC was more valuable than anything in our acceptance of the diagnosis. Before that, we felt like we were really alone because everyone and everything pertained to boys,” Becky stated. “It took time for people to focus on the diagnosis and not on the gender. In time we became part of the hemophilia B community, and everyone accepted Elizabeth as a person, just like the others who had hemophilia B.
Becky feels that over the past 14 years, the educational information for women with bleeding disorders has increased quite a bit. She has become very proactive in her efforts to build awareness with as many women as she meets. She tells them, “If you have bleeding issues, get your levels checked because there might be a reason for this.” “I do see more women speaking up now and things are changing in the hemophilia B community,” Becky says.
As a teacher, she has had an impact on some of her previous students who are now in college and call her with statements professors have made such as, “Women can’t have hemophilia.” Becky believes that little by little awareness will continue to build that hemophilia B is not necessarily gender-specific. “Instead of focusing on gender, if your factor levels are low, you are a hemophiliac. If you are a symptomatic carrier, you are a mild or moderate hemophiliac.”
Becky says, “When we first joined the hemophilia B community, everyone was shocked. Now it is okay. We’re finally in the place where women are accepted as a part of the community, and we are no longer alone.”