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.
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.
I am sitting here in my daughter’s hospital room, watching her as she sleeps, pondering on her future and the future of other Filipino “bleeders” like her. With the election fever high up in the air, I wonder what difference the incoming elected officials will bring to the very sick public health sector.
“Bawal magkasakit” is so real in this country where health care is almost like a luxury, especially for people with rare disorders like Hemophilia. Also known as “royal disease,” it is so coined because some members of the royal families are affected by it…. In the Philippines, the term “royal disease” takes a different meaning. It is considered a “royal disease” because only the “royals” can seemingly afford it. Hemophilia treatment is very expensive. Minor bleeds can cost a minimum of P30,000 per treatment. This does not include cost of hospitalization and the doctor’s fees. Major treatments can cost millions.