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).
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.
On the verge of an incredible feat, Bob Leahy talks to HIV, HepC and hemophilia long-term survivor Barry Haarde from Houston, Texas, who is about to ride his bike 3,667 miles coast to coast across North America.
Bob Leahy: Hello Barry, It’s a pleasure to talk to you. PositiveLite.com readers will recall we featured your story here and now you have something new to talk about. You’re about to start cycling across North America, from west to east, right? I want to talk about that in a minute, and I’m excited your tour includes a little piece of Canada, but first I want to delve in to your story, if that’s OK with you. Now your story has similarities with Vaughn Ripley’s, whom we interviewed a few weeks back. You know Vaughn right? He sounds like a great guy.
Barry: I first learned about Vaughn when I ran across his book, Survivor, on Amazon. We met for the first time last year and have done some cycling together. He and I both “came out” about the same time and our stories are very similar. He wants to ride across America too, and he may be the only guy I know from the generation of hemophiliacs that contracted HIV that is in shape to do it.
About the author: Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com publisher Brian Finch. He joined PositiveLite.Com at its inception in 2009 and became it’s Editor a year later.
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.” ….