To be a woman in a man’s world

By | Bleeding Disorders, Featured, Haplos, Hemophilia, Laurie Kelley, Philippines, Project Share | One Comment

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.

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barry haarde

4 Ways To Become A Hemophilia Advocate

By | Bleeding Disorders, Blood Brothers, Haplos, Hemophilia, Laurie Kelley, Philippines, Save One Life | No Comments

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.

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