"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
Elaines level of factor VIII was low. It wasnt
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 Elaines 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 shes
spent time with both the teenaged girlat the mall and
the moviesand 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 canas
a camp counselor, former member of the board of directors
of her chapter, and friend to adolescent and parent.
<< BACK NEXT >>