Your Stories 

Elaine Lai

"Being a counselor at bleeding disorders camp is the highlight of my year," says Elaine Lai. A symptomatic carrier of factor VIII deficiency, this college student has been part of the bleeding disorders community for many years, but "people see me as the sister of two hemophilic boys, not as a young woman with a bleeding disorder," she says. Elaine was diagnosed only a few years ago.

Elaine was tested for her carrier status almost 15 years ago when her brother was born and diagnosed with hemophilia. The birth of a second hemophilic brother meant that the boys got most of the medical attention. As a child, Elaine would experience bloody noses and frequent bruising, and her brothers’ hematologist suspected that Elaine’s level of factor VIII was low. It wasn’t until Elaine was 17 and bled from her gums for three weeks after having her wisdom teeth removed that her health insurance company agreed to cover the cost of testing the level of factor VIII in Elaine’s blood. Without the test results, Elaine could not be treated for her bleeding disorder: 34% of the normal level of factor VIII.

Elaine became involved with the bleeding disorders community in the San Francisco area long before her diagnosis. Having attended many chapter activities as a child, Elaine started volunteering when she was a young teenager. She felt she could "give something back" to the community that had supported her and her brothers.

Now, Elaine is one of the volunteers that people turn to for support. Sharing her experiences and listening to concerns, Elaine tries to ease minds and reinforce the positive. One family finds her so approachable that she’s spent time with both the teenaged girl–at the mall and the movies–and on the phone with her mother, listening to her concerns about her daughter.

Elaine sees that sometimes teenagers and adults have trouble working together. Some adults have a hard time relating to young people, she says, but these young people want to make a contribution to the bleeding disorders community. Elaine encourages teenagers to show adults that they should be taken seriously, that they are trustworthy, and that they will honor their commitments.

This sister of boys with hemophilia is sensitive to the needs of young girls, whether or not they themselves have a bleeding disorder. She sees few role models for young girls and tries to fill that role in whatever way she can–as a camp counselor, former member of the board of directors of her chapter, and friend to adolescent and parent.

<< BACK    NEXT >>