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SHELLYE He had a lot of gay friends because that organizations can help to meet this
HOROWITZ was his HIV+ peer group.” Shellye’s need, but an inclusive space for people
family spent the better part of her who fall outside of the majority may
10 teens participating in public education need improvement — education and
efforts to help put a face to people living programming tend to focus on the
with HIV. She now uses the skills she experiences of binary, cisgender men
developed then to advocate for women with hemophilia. At least one transgender
man in the community reports feeling he
“There’s a powerful has to choose whether to participate in
bleeding disorders education for women
transformation that or men. His needs as someone who used
happens when you’re to have a menstrual cycle may not be
able to understand wholly met with either group.
and speak your truth. As a person with a bleeding disorder
matures, it brings up questions about
— Shellye Horowitz what safe sex means for someone who
is prone to more bruising and bleeding
with hemophilia. She draws parallels than others. Sexual and reproductive
between the experience of navigating health are part of overall health, but
a hemotypical world as a person with healthcare and education systems tend to
hemophilia and navigating a heterosexual focus on cisgender, heterosexual bodies.
world as a lesbian. “There’s a powerful Healthcare providers specializing in
transformation that happens when you’re treating LGBTQIA+ people may be hard
able to understand and speak your truth.” to find, and providers may not be aware
of the ways being queer can intersect
Discrimination in with having a bleeding disorder. While
Resources and the role as LGBTQIA+ patients does
Treatment not differ greatly from cisgender and
heterosexual patients, there are distinct
While it is illegal to needs to be addressed such as sexual and
discriminate on the reproductive health and risk for certain
basis of sex, gender diseases.
or orientation, Finding doctors who provide gender-
LGBTQIA+ people affirming treatment to patients with
are more likely to bleeding disorders can be challenging.
be discriminated Stacy shares, “The HTC has very clear
against in public venues, procedures around surgical bleeding, but
including employment. I’m struggling to find a surgeon who will
“I work in construction,” says work with a bleeder.” The mother of a
Eleanor Anderson. “Every time I meet a transgender teen shared their daughter’s
new worker, I worry they might be rude HTC was able to develop a treatment plan
to me because I’m a woman. Or worse, if that matched her needs, but that “cost
they find out I’m transgender. I also worry is also a huge issue for anyone going
about what would happen if I was injured through transition.”
on the job. Will I get to the hospital in Couples seeking to grow their family may
time for them to stop the bleeding? What also face significant cost. “I want a big
if I lose health insurance?” said Eleanor. family someday,” laughs Eleanor. Family
Stacy Pechter of Minnesota asks similar planning expenses may run as high as
questions: “How do I manage my chronic $100,000 and aren’t always covered by
condition and take care of myself? Put insurance. Couples also face the question
food on the table? Advocate for my own of whether or not they want their child to
needs?” have a bleeding disorder. The Hemophilia
Patient education and advocacy Foundation of Michigan offers an
adoption program for parents who seek
