Bloggers Unite!

Blog tracker Technorati estimates there are 100,000 new blogs created each day, and 1.3 million posts added daily. The blogging “elite,” who have at least 500 other blogs linking to them, number about 4,000. We fall short of these stats in the hemophilia community. We have maybe two, three blogs? We are just in the early stages of developing hemophilia blogs, and HemaBlog is among the first, and definitely the first blog dedicated to solely hemophilia issues.

And we are evolving at last. I received a friendly email this past week from Johnpatrick, a young man with hemophilia and fellow blogger. He has been reading my blogs, and wondering where are all the other people with hemophilia on the internet? Where do they hang out? Are they interested in reading about other people with hemophilia? Good questions!

Johnpatrick writes, “I’m a twenty-something with severe factor VIII deficiency with an inhibitor, and I’ve decided to take a cue from people like you and Shawn Decker (author of “My Pet Virus”) and start a blog about the hemophilia experience. I think I can bring something new to cyberspace by talking about my own experiences as a hemophiliac and law student. I don’t know a lot of hemophiliacs, and I don’t know where in the internet they tend to hang out. I was hoping you could help me, a fledgling blogger attract young professional hemophiliacs like myself to the site.

Johnpatrick’s web site is: http://breakingtheseventhseal.blogspot.com/

It’s very interesting and well written. Please take a moment to visit him and drop him a line, especially if you also are a young man or woman with hemophilia. He has an interesting post about hemophilia and Colin Powell. And we welcome your comments as well!

Speaking of lawyers, here’s a good book I am reading: “Thirteen Moons,” by Charles Frazier, who also wrote “Cold Mountain.” Sober, beautifully written personal account of a white boy raised by the Cherokee, who later becomes a lawyer and tries to defend them and preserve their land and way of life when President Jackson orders all Indian land forfeited, and all Indians to relocate to the West. It is historical fiction, yet a subtle, pragmatic and blunt look at our nation’s handling of America’s indigenous people.

Origins of HemaBlog

HemaBlog apparently is the bleeding disorder community’s first dedicated blog to all things related to hemophilia and VWD. For me, it’s a fun way to bring my observations to you weekly, in an informal manner. While we enjoy being a company that provides so many firsts, I must give credit where it is due–the blog was the brainchild of our webmaster Amanda Wendt. Amanda is president of Mandalin Design, and is an excellent web designer, webmaster and member of our team. 

We originally called this “Laurie’s Blog,” but for me this wasn’t really accurate. I don’t want this to be only about my personal observations, but also as a way to nonintrusively keep you all up to date with things in our community. I changed the name to HemaBlog, in a play on words, for those of you who recall the former HemaLog, published by Materia Medica with funding from Centeon. It is no longer in print, sadly, but its name lives on (sort of).

Well, here’s a way HemaBlog can keep you informed. Recall that for the past two years we’ve been alerting the community to massive changes in how factor is being delivered–in the quest by insurance companies and the government to lower healthcare costs. These changes have impacted the finances and lifestyles of families with hemophilia. The number one concern we have heard from families is that they wake up one morning, and their factor provider has been bought, sold, consolidated… you name it. Well, it has happened again. CVS is buying Caremark Rx for $21 billion. Read about this latest buyout in the newswires and we will surely write about this in the next issue of PEN– how this will affect you who use Caremark’s services, and all of us who use factor. The Coming Storm is now the Current Storm–and the fallout from this storm continues to affect us all.

PS. Book I read this week: “Nickel and Dimed: On (Not) Getting By in America” by Barbara Ehrenreich. Journalist writes a scathing expose on the working poor after getting herself hired as a maid, waitress and Wal-Mart employee in three different cities in one year. Offers no solutions, but tons of empathy for and insight on those in America who serve us. THREE STARS (out of four)

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