google doodle

Dear Google

By | Bleeding Disorders, Featured, Hemophilia, Hemophilia Federation India, News, Philippines, von Willebrand Disease, World Federation of Hemophilia | 2 Comments

April 17 is celebrated as World Hemophilia Day to raise awareness about hemophilia and other inherited bleeding disorders. Globally, 1 in 1,000 people has a bleeding disorder. Most are not diagnosed and do not receive treatment. Together we can change that. Let’s all ask Google to feature the World Hemophilia Day in its Doodle on April 17. Write to proposals@google.com with the subject: Google Doodle for World Hemophilia Day on April 17.

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Face-to-face with a rare bleeding disorder

By | Bleeding Disorders, Blood Brothers, Family, Featured, Haplos, Healing, Hemophilia, News, Philippines, von Willebrand Disease | No Comments

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.

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Bayer Announces 2012 Recipients of Bayer Hemophilia Awards Program

By | News | No Comments

Bayer HealthCare today announced the 2012 recipients of the Bayer Hemophilia Awards Program (BHAP). This year, the company awards a total of approximately $2.3 million USD in funding to 15 recipients in nine countries.

BHAP is the largest program of its kind in hemophilia, funding innovative research and educational initiatives around the world. As such, BHAP is part of Bayer’s commitment to research, support and disease management in hemophilia.

The 2012 announcement is especially meaningful, as it marks the 10th anniversary of BHAP and its resulting contributions to the global hemophilia community. Since its founding in 2002, BHAP has awarded more than 200 grants, totaling more than $24 million USD, to researchers and caregivers from 29 countries around the world. BHAP support has resulted in more than 360 scientific abstracts, publications and presentations by awardees.

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barry haarde

Interview with an extraordinary man: Barry Haarde

By | News, Save One Life | No Comments

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.

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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.

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A Cheap Drug Is Found to Save Bleeding Victims

By | News | No Comments

For months, a simple generic drug has been saving lives on America’s battlefields by slowing the bleeding of even gravely wounded soldiers.

Even better, it is cheap. But its very inexpensiveness has slowed its entry into American emergency rooms, where it might save the lives of bleeding victims of car crashes, shootings and stabbings — up to 4,000 Americans a year, according to a recent study.

Because there is so little profit in it, the companies that make it do not champion it.

However, the drug is edging slowly closer to adoption as hospitals in New York and other major cities debate adding it to their pharmacies. The drug, tranexamic acid, has long been sold over the counter in Britain and Japan for heavy menstrual flow.

After a groundbreaking 2010 trial on 20,000 hemorrhaging trauma patients in 40 countries showed that it saved lives, the British and American Armies adopted it. The World Health Organization added it to its essential drugs list last year, and British ambulances now carry it.

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