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.
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.
Here are 4 practical ways to be a hemophilia advocate:
Talk about hemophilia. In your school. In your blog. In your FB wall. In your tweets. Wherever your sphere of influence may be, talk about hemophilia. By doing so, you raise awareness on this still largely unknown disorder.
Volunteer. Whether you have hemophilia or you don’t, if you have t a heart to reach out to the hemophilia community, volunteer your services. You can organize psycho-social activities for the youth group, or a camp for the children or you can assist in the general meetings. Whatever way you think you can help, let your local hemophilia community know that you are willing and available to help.
Visit a sick person with hemophilia. Every now and then, a “blood brother or sister” gets sick. Visit him/her whether in the hospital or in his/her home. That someone will be grateful to know you care.
Be active in your local hemophilia group. While being “connected” in social networking sites like Facebook and Twitter is good, nothing beats being connected in flesh. So go, attend meetings of your local hemophilia community.
Raising a child with a special condition — whether hemophilia or something else — poses a different set of challenges. On top of that, living in a country like the Philippines where public healthcare is so wanting in so many ways, can add up to the daunting task of raising a child with a rare disorder like hemophilia.
Children with hemophilia have unique needs compared with others, even their own siblings without the condition. And yet, we parents need to be careful NOT to put our children with special needs inside a bubble. Below are some basic tips that may be helpful, particularly to parents in developing countries like the Philippines.
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.” ….