Patient stories
Where are they now image : 
Where are they now

Elizabeth, now 18, has a lot to look forward to as she heads off to college this fall. She’s especially looking forward to the removal of her port this summer.

Over the years, Elizabeth has learned how to self-infuse. Initially, she experienced a lot of anxiety about it, but after attending Camp Little Oak the past 2 summers, she’s gained a lot of confidence and has become better at self-infusing.

While her involvement in the hemophilia B community has lessened over the years due to the demands of being a busy high school student, and she will soon face the demands of a busy college student, Elizabeth continues to participate as she can. In fact, she recently attended a symposium in New York where she led the team session and self-infused in front of everyone. She talked through the process and answered questions from young kids in attendance.

Being a young woman with severe hemophilia may be rare, but Elizabeth has it under control. She manages her care by ordering her own factor and is making arrangements to have a nurse nearby when she goes away to college.

Where they began »
Where are they now image : 
Where they began

When Elizabeth was in third and fourth grades, she was very angry that she had hemophilia B. “There was a stage when I was so angry. I am over that now, and in order to do what I want to do, I just accept it and move on. I don’t talk about it much at all. My classes at school are all single gender, so it has not been an issue.” Her hemophilia B has mainly impacted her physical education classes.

Elizabeth has been learning to self-infuse and is doing well. She feels that she will definitely be able to do this herself as she gets older and when she goes to college.

The hemophilia B community is now much more accepting of Elizabeth and other women with bleeding disorders. Elizabeth has been doing what she can to inform people about women with hemophilia B and explain how she is coping. When she was in New York, she spoke to children with hemophilia about the disorder and how to manage daily challenges. She credits her family with being a great support and says her sisters think it is cool that she is doing her own self-infusing.

When asked about her future, she says that she is already thinking about how she will need to consider specific jobs and insurance plans. She says she may consider becoming a teacher and shares that she loves music and golf. “I love golf, but I am not into many other sports. I am more of a musical person—I play the piano, flute, and guitar.” Elizabeth has plans like any other teen. She says, “I’ll progress normally like anyone else. Hemophilia B doesn’t define me, it’s only a part of who I am.”

Where are they now »