Communication plays a very significant role in changing paradigms, especially in this digital age. In this speech, which I delivered at the Silliman University College of Mass Communication, I shared how I used my background in the field of communication to advocate for people with bleeding disorders.
I am an advocate for people with bleeding disorders.
In 2007, our youngest daughter Star and I were diagnosed with von Willebrand Disease (Type 2M), a rare bleeding disorder also known as pseudo-hemophilia. It is an inherited disorder that impacts the blood’s ability to clot properly. As a group, bleeding disorders like vWD and hemophilia are rare.
For a long time, it was believed that bleeding disorders only affect men. But in 1926, Finnish pediatrician Erik Adolf von Willebrand, discovered a different type of bleeding disorder that equally affects men and women.
April 17 is celebrated as World Hemophilia Day to raise awareness about hemophilia and other inherited bleeding disorders. Globally, 1 in 1,000 people has a bleeding disorder. Most are not diagnosed and do not receive treatment. Together we can change that. Let’s all ask Google to feature the World Hemophilia Day in its Doodle on April 17. Write to email@example.com with the subject: Google Doodle for World Hemophilia Day on April 17.
On April 11-12, our Women’s Group at the Hemophilia Association of the Philippines for Love and Service (HAPLOS) will be spearheading an exhibit at the Glorietta Mall Activity in Makati City to raise awareness on hemophilia and other bleeding disorders, as well as to raise funds.
I am trapped in a man’s world. But of another kind. For many years, medical science believed that bleeding disorders such as Hemophilia only affect boys and men. And so even as I grew up experiencing heavy monthly bleeds, I was never considered a candidate for a bleeding disorder.
Hemophilia, von Willebrand Disease and other factor deficiencies are rare genetic disorders that affect the person’s ability to clot. It is usually sex-linked and thus, boys who inherited the X-chromosome from their mothers are more likely to show symptoms. On the other hand, girls who got it from their fathers, are said to unlikely show symptoms.
I had always thought that it was “normal” for girls and women to bleed heavily during their monthly periods. After all, I grew up seeing the chamber pot (arinola) in my parents’ room filled with red liquid on the weeks that my mom had.
It was not unusual for us—my mother, my sisters and I—to go home unplanned on days we had our periods because of blood stain. Our mother knew she was a “bleeder.” Like her, we would all “bleed” for weeks to months. But at a time when the Internet was still unknown and medical journals were hard to access, doctors did not have any explanation on our excessive and prolonged menses. Only boys and men could have bleeding disorders, we were told.
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 gene is very remote (plus the fact that hemophilia is rare).
Today, Star and I attended an orientation for homeschooling. After six months of “unschooling,” she is determined now more than ever not to go back to regular school.
The past six months have not really been that easy. Home-based study, whether through a structured curriculum or a free-willing one, like what we’re doing, needs focus, time and discipline. I like the idea of homeschooling. After all, the Bible tells us that parents should train their children the way they should go so that when they grow old, they will not depart from it. But it is easier said than done.