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 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.
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).
Don’t let anyone tell you what you cannot do. You can do it if you will. That is what I always tell my kids – including my now 13-year-old daughter Star, who was diagnosed with von Willebrand Disease (vWD) six years ago. VWD belongs to the group of bleeding disorders more known as hemophilia, where the person’s blood lacks the ability of clot.
Star is supposed to be a moderate “bleeder” but ever since she started having her monthly periods, I have second thoughts on the meaning of “moderate.” ….