Thursday, March 7, 2013

International Women’s Day and Us Women With Bleeding Disorders




March 8 is International Women’s Day.  Originally called International Working Women’s Day, it started as  a political event in recognition of the struggles of women worldwide for equal rights including the right to suffrage.  Today, in most parts of the world, women have become empowered and to some extent, even more than men. 

But in the hemophilia community, women with bleeding disorders continue to struggle for recognition.   Many doctors and medical practitioners mistakenly hold on to the belief that only males can be affected by hemophilia.   This is because hemophilia is generally perceived as a sex-linked disorder.  Since males only have one X chromosome while females have two, the defective gene is guaranteed to manifest in any male who carries it.  And because females have two X chromosomes, the probability of having two defective genes is very remote (plus the fact that hemophilia is rare).

Most women carriers are asymptomatic or do not exhibit any symptoms of the bleeding disorder.  If the offspring is a male, chances are he will show symptoms.  But there are actually more types of hemophilia that are autosomal or non-sex related.  There are 10 types of clotting factors in our blood. Clotting factors are proteins that makes the bleed stop naturally.  In people with hemophilia, their blood takes longer to clot because they either lack clotting factor  or their clotting factors are defective.

Imagine when women have hemophilia.  Monthly periods can turn into monthly nightmares.  Last year, Star’s menses went on practically non-stop for nine months.   She had to be confined five times, not counting the outpatient treatments in between.  And yet, I’ve heard of other women who bleed for two years non-stop.  Even the Bible recorded a woman who bled for 12 years!

According to Dr. Michael Tarantino, a doctor of a Red Cross clinic in California, understanding of bleeding disorders in women has not progressed far enough.

“Women and girls with bleeding disorders often get written off because they’re not boys,”  Tarantino was quoted in an article on PJStar.Com.  “So it takes longer to get a diagnosis in girls. They’re usually adults by the time they’re diagnosed.”

Even the terminology “hemophilia” to refer to bleeding disorders in general is subject to debates in the hemophilia community.  Some say hemophilia only refers to deficiencies in coagulant Factor VIII (Hemophilia A), Factor IX (Hemophilia B) and Factor XI deficient (Hemophilia C).  Others insist that other coagulant factor deficiencies (Factors I, II, III, IV, V, VII and vWD) should also be called hemophilia.

It may take a while for the terminology issue to be put to rest.  But what is clear is that — yes, women can also have bleeding disorders.##