Page 8 - HFA Dateline 2017 Q1 Spring

Women’s Bleeding Disorders

By Linda E Wyman-Collins BSN, RNC-NIC

t’s a simple fact: you can’t treat what you don’t ac-
Iknowledge. When it comes to hemophilia, we don’t Women are subject to many types of bleeding disorders.
Here are some examples:
acknowledge to what extent women are actually af-
fected. Across this country, and the world, women
are under-diagnosed and under-treated and, not sur- Von Willebrand Disease (vWD)
prisingly, that translates into women suffering and
dying. For so many years, women who actually have Officials estimate that 1-2 percent of the general population
hemophilia have instead been labeled as “symptom- has von Willebrand disease (vWD) and is living undiagnosed,
atic carriers.” Proper diagnosis needs to be based on making vWD the most common bleeding disorder in the world.
documented factor levels and not on gender when it It is found equally in men and women, but again is extremely
comes to hemophilia, but setting aside two centuries under-diagnosed. Those with vWD may also have low factor
of medical lore is tough. Nowadays, we know that VIII levels. Women can have deficiencies in other factors such
“symptomatic carrier” is not appropriate or accurate. as VII, IX (Hemophilia B), XI and XIII.
Newer studies have shown women labeled as symp-
tomatic carriers have low factor levels; fifty percent of
females who are “carriers” for hemophilia have Factor Platelet Disorders
VIII or IX levels below 50%. Women may show perma- Platelet disorders are also a possibility when abnormal bleeding
nent joint damage even with factor levels that would is present. Platelet disorders include Glanzmann’s Thromboasthe-
be considered adequate. The vast majority of women nia, Bernard-Soulier Syndrome, and Platelet Storage Pool Defiency.
who have a son diagnosed with hemophilia, do not Platelet disorders may involve low numbers, an inability to stick
know their own factor levels. And if a woman believes well to each other, or inability to travel to the site of the injury.
she is “just” a carrier, she may end up accepting sub-
optimal treatment by her health care providers, from
routine procedures like dental work, to surgeries and Abnormal Uterine Bleeding (AUB)
trauma care.
One common problem women, in and out of the bleeding disor-
How is it that so many health professionals, as well as der community, encounter is abnormal uterine bleeding. In the
the general public, still are under the misapprehen- US, surveys report that 53 in 1000 women, ages 18-50 years of
sion that hemophilia is visited only on males? Genet- age, have had AUB. Abnormal uterine bleeding can be defined as
ics is a complex arena of research. Everyone knows bleeding for more than seven days, need to change pad or tampon
that males have an X and a Y chromosome as their every hour, passing clots larger than a quarter, blood loss greater
23rd pair and females have two X chromosomes. It’s than 80ml or daily activities limited due to heavy flow. AUB can
also commonly known that the gene for hemophilia impact women’s quality of life, productivity, and utilization of
A and B is carried on the X chromosome. What is healthcare services.
lesser known, even by health professionals, is a situa-
tion called “Lyonization” or “X inactivation” in which
women can actually have the “clotting” gene shut Connective Tissue Disorders
off, leaving the X chromosome with only the hemo- Women who have a connective tissue disorder such as Ehler’s
philia gene “turned on.” The percentage of cells in a Danlos disease may have increased bleeding tendencies. They
woman’s body affected by this Lyonization can vary, may have fragile blood vessels or loose joints that easily dislocate.
leaving some women with very low levels of clotting This increases the chance of bleeding into soft tissues, muscles,
factor. and joints.

8 Dateline Federation | Spring 2017