Page 17 - HFA Dateline 2021 Q4 Winter

“The advocacy is so important for healing because it
empowers you to be able to move forward and help others.

How much better can their life be if I advocate for this,
if I work with organizations in my community?”

—Tammy Jones

Sarah O’Brien, MD, a pediatric hematology-oncology isn’t a normal menses.” It’s not something often taught,
specialist at Nationwide Children’s Hospital in Columbus, unlike the extensive education new parents get bringing
Ohio, often finds frequent nosebleeds are a part of a a baby home from the hospital. By the time that baby is
woman’s history with bleeding disorders. But because a teenager, neither parents nor teenagers may know the
nosebleeds aren’t that rare, the bleeding disorder isn’t often signs to watch for.
caught at that stage, she said. It isn’t until adding in heavy
menstrual bleeding that the picture begins to emerge. Health care providers also don’t often know the questions to
ask. The only question a woman might get from her doctor is
“We know that there can be delays in diagnosis for both if her period is normal or if there are concerns. According to
men and women with bleeding disorders,” she said. “One O’Brien, providers should be asking more specific questions,
huge barrier is not enough women recognize what is or such as how many days a period lasts, if they’re going
through more than four to five pads a
day, or if they’re getting up at night to
Leisa MacDougall and
her son, Jayden change a pad. “If a patient answers yes

to any of those questions, it’s a red flag
there may be an underlying issue.”
Robert Sidonio Jr., MD, a hematologist
and associate professor of pediatrics
at Emory University in Atlanta, said
there is a shortage of hematologists
with the expertise to perform a
workup for a bleeding disorder and
properly interpret the results. There
are good providers in every state, but
many people, especially in more rural
areas, have no choice but to drive long
distances to find one that understands
the complexities of their condition.

Sidonio explained that the
hematology field is trying to shorten
the gap from bleeding symptom
to diagnosis, but “we need to do
a better job at educating primary
care and emergency room doctors,
possibly with a lecture series.” After
all, they are the ones on the front
lines for heavy bleeding episodes and
a person’s entry point into bleeding
disorder specialty care.

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