Since we just celebrated Veteran's Day in America, when the Treaty of Versailles was signed on the 11th day of the 11th month, 1919, effectively ending World War I, it is fitting to look at just how much we should appreciate our numerous freedoms, especially freedom of speech. Freedom of speech, so vital to the hemophilia community in the US and other countries still seeking inquiries into how and why so many with hemophilia died of AIDS, is not yet a reality in many countries, who continue to suffer without support or relief from their governments.
This past week, China banned a conference called "Blood Safety, AIDS and Human Rights," organized by the Beijing Aizhixing Institute of Health Education, in cooperation with hemophilia activists, which was to take place in Beijing last Saturday. Reuters reports, "Police went to the building housing the Aizhixing Institute on Friday and asked its director, Wan Yanhai, to speak to them downstairs, [a] source said." Wan then phoned the institute and asked staff to cancel the conference. Wan did not return to the institute and his whereabouts were unknown.
China has been criticized for ignoring the existence of the AIDS epidemic, which contributed to its spread. The Communist authorities are suspicious of groups they cannot directly control, like the hemophilia patient group. Indeed, a leading patient advocate in China, who has hemophilia, told me that no more than 10 hemophilia patients can meet at a time, or else they would be considered subversive. I think of the recent NHF meeting, where about 2,000 met to network, share and learn. I realize how stifled so many are in our global community, and how blessed we are. But we are blessed as a result of those brave souls who dared to speak out, on the wings of our protected freedoms. Would that China had such blessings, but its people with hemophilia do have courage and perseverance, and we hope for them.
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Monday, November 20, 2006
We've just released a new book, Legacy: The Hemophilia of Yesterday, and I am urging everyone to order a copy (free to parents and patients). It's the published diaries of Ralph Dean Rytting, a teen with hemophilia during 1942-44. When he begins his diary, he does not even know he has hemophilia. Half way through, he is diagnosed. Of course, back then he only had whole blood transfusions as a treatment. The pain and suffering he endured is monumental, and so is his patience, perseverance and optimism.
I guarantee that when you read this book, you will see your own life in a new perspective. During this time of Thanksgiving, you will feel greater appreciation for what you have in your life. You may find yourself saying, as I have, "If Ralph could endure what he did with grace and acceptance, then I can endure what I am going through now with the same."
It's amazing to think that this young teen, who never imagined that his diary would one day be published, offers so many words of wisdom with so much perspective. Growing up in Idaho, Ralph also eloquently brings us back to a simpler time in America, where family, faith and friends came first. To read this book is to be refreshed and renewed. It's why I took on this project and am eager to bring it to you.
The book also is relevant to today. Ralph writes during World War II, and his journals are filled with references to the newspaper headlines and ongoing battles. Indeed, we end the book with a journal entry: Ralph reflects how the country is at war, terrible battles are raging, and lives are lost, yet he sits in the sunshine in the peace of the western plains. He has difficulty reconciling the two images, and says simply, "I'm thankful to be here."
Order your free copy today. Authored by Matt Barkdull, grandson of Ralph Dean Rytting. Sponsored by Hemophilia Health Service and Bayer HealthCare.
Monday, November 13, 2006
As many of you know, I am the mother of Tommy, a 19-year-old with hemophilia. Being a mother to him has been my inspiration for much of the work I do. Now that he is on the brink of being a man, looking forward to leaving home (soon) and striking out on his own, I realize that no matter what we do for our children, how we teach them, how we raise them, there's some part of them that will always be just them. As young adults, as individuals, they will be who they are destined to be.
Tommy claims he is destined to be a rocker. His first love is music (guitar and keyboard). His second apparently, his hair, if you can claim that love is expressed in the amount of time you lavish on something. He sports wiry dreadlocks (which I actually helped mold out of his shaggy locks). To complete the rocker look, he needed something more. This is the part where he strikes out on his own as a young man.
A tattoo. He arrived home last weekend with a sheepish, "Mom, I wanted to show you this..." I knew what was coming: mother's intuition? I braced myself for skulls with daggers in the sockets (a la Pantera), or a cemetery with crosses (a la Metallica). But no. It was beautiful, simple and elegant... And Irish. Embossed on his right deltoid was a gorgeous, modern and shimmering shamrock. If you're of Irish descent, looking for a classy tattoo, what better image than a shamrock? My first question: did you prophylax? No. (And surprisingly, no bleeding, though Tommy has moderate hem. A)
I actually love it. I jokingly told him it could only improve if he added "Mom" to it. What's next on his list of growing up? I can hardly wait.
Posted by Laurie Kelley at 9:36 AM
Sunday, November 05, 2006
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 Designs, and is an excellent web designer, webmaster and member of our team. You can contact her at firstname.lastname@example.org if you know someone looking for a top-notch web designer to hire.
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 citiies 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)
Posted by Laurie Kelley at 8:21 PM