Page 16 - HFA Dateline 2021 Q4 Winter

Traditionally, the bleeding disorders
community hasn’t focused on women
and the unique symptoms and
complications they can have. Many
women go years without proper
diagnosis, sometimes being told their
excessive menstrual bleeding is normal.
Fortunately, there have been strides
in the medical community that have
given more recognition to women with
bleeding disorders in recent years.
With this, comes more opportunities
for women to get diagnosed—and
treated—earlier, share their stories
and empower others to advocate for
themselves and their families.

Challenges in Diagnosing
For Rachael Robinson, 53, of Owasso,
Oklahoma, her Factor 13 carrier
status was a surprise as well. She had
heavier periods growing up but didn’t
think it was abnormal enough to tell
her doctor. “I never had nosebleeds,
but I do bruise easily,” she said.

After an uneventful birth, her son Rachael Robinson
experienced bleeding complications with her family
after his circumcision. They saw a
pediatric urologist and there was talk After being cleared by the surgeon, MacDougall’s son made
of a possible bleeding disorder, but testing was never done.
two visits to the emergency department for vomiting blood
As her son grew, he bruised and had a lot of bumps under and for a 3.1 hemoglobin level. The surgeon asked MacDougall
his skin. Several times she’d take him to the local pediatric about a family history of bleeding disorders; in his 40 years,
hematologist only for her concerns to be dismissed. Factor he had never had a child bleed like that, he told her.
assays, timed bleeding tests, platelet aggregation—all of them But, according to MacDougall, her son’s pediatrician refused
were normal, but only because Factor 13 wasn’t included.
to run tests, stating they were not necessary. MacDougall’s
The family was sent to a bleeding disorder center in surgeon was the one who referred the family to the Jimmy
Oklahoma City when her son was five, where he was finally Everest Center for Cancer and Blood Diseases in Children
diagnosed with severe Factor 13 deficiency. Robinson and in Oklahoma City. That’s where her son was diagnosed with
her husband were never tested since it was implied both of VWD type 1 and mild hemophilia B. MacDougall and her mom
them were carriers. were also diagnosed: Her mom had mild hemophilia B, and
MacDougall had type 1 VWD and was a hemophilia B carrier.
Growing up, Leisa MacDougall, now 43 and living in Enid,
Oklahoma, had no idea it wasn’t normal for her menstrual “It felt wonderful to be validated,” MacDougall said. Like
cycle to last more than two weeks. Her mother always others diagnosed later in life, she could look back and see
told her they were a family of bleeders. It wasn’t until the patterns. As a child, she remembered pinching her nose
MacDougall’s son, Jayden, was four years old and had closed during a bleed for what seemed like hours. “There have
tonsil surgery that there was a concern, as he was still been occasions as an adult where I have nosebleeds in the
bleeding 10 days post-op. middle of the night and wake up with the pillowcase soaked.”

16 DATELINE FEDERATION < www.hemophiliafed.org