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.
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.