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).
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.
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.
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.
Barry Haarde, of The Woodlands, will be riding 3,700 miles from June 18 to Aug. 6 to raise funds for Save One Life, an organization that helps developing countries which struggle to battle hemophilia. Haarde was born with hemophilia and contracted HIV as a result of blood transfusions at age 13.
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.