Poorly researched hemophilia article leaves wrong impression

Every so often I search the news for hemophilia-related articles. Being fully enmeshed in the bleeding disorders community I think I have a fairly full understanding of hemophilia. But I can understand how journalists can get details confused and some explanations fall short. No problem. As long as the basics and general information are related accurately they get a pass.

But this article coming out of India leaves the reader with the appalling impression that hemophiliacs develop HIV and hepatitis. All on their own.

From the article:

Hemophiliacs in the health centres who are in their late 60’s or 70’s are crippled and disabled. This was due to the non-seriousness attitude of the governments and the lack of reach of proper medication. If this disease is not treated at the right time, it can lead to permanent disability or HIV and hepatitis.

Nothing else. no explanation of viral transmission from tainted blood supplies. There's certainly a long and documented history of this travesty to draw from.

The blurb at the top of the article is similar:

Today there are over 100,000 people affected with hemophilia in India. It can lead to permanent disability, HIV or hepatitis if not detected at the right time.

Frankly it's a shame. Much of the information in the article is accurate, if explained poorly. By the time I read the article it had already had 392 views. Potentially 392 misinformed impressions about hemophilia and HIV/hepatitis. Unfortunately this is how unwarranted biases and prejudices begin.

(Side note: funny how the article employs British spelling: centres, organisation; yet doesn't use the spelling haemophilia. Not important, just funny)

Pop !

That was the sound of the Democrat Denver party balloon.

Less than 12 hours after Sen. Barak Obama's coronation the headlines at all the media outlets read:

It's Palin!!



















Bold. Risky. Exciting!

Definitely not the usual Republican fare.

I have a dream...Congratulations Sen. Obama

It is fitting that Sen. Barack Obama accepts the Democratic Party's presidential nomination tonight. Forty five years after Rev. Martin Luther King gave his monumental "I have a dream" speech on the steps of the Lincoln Memorial a black man stands where no black man has stood before; at the top of his party's ticket and one step from the office of President of the United States.

From MLK's speech that day:

"I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident: that all men are created equal."

I have a dream that one day on the red hills of Georgia the sons of former slaves and the sons of former slave owners will be able to sit down together at a table of brotherhood.

I have a dream that one day even the state of Mississippi, a desert state, sweltering with the heat of injustice and oppression, will be transformed into an oasis of freedom and justice.

I have a dream that my four children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.

I have a dream today.”

And

"When we let freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual, "Free at last! free at last! thank God Almighty, we are free at last!"

Congratulations Sen. Obama.













I agree with Sen. Obama on very little but I truly hope he is judged fairly not by the color of his skin but by the content of his character (and his standing on the issues).

Local article on Hemophilia and the Hemophilia Walk

Here's a nice article profiling a local family and hemophilia and publicizing the September 6th Houston Hemophilia Walk supporting the Lone Star Chapter of the NHF.

(Katy, Texas is a suburb just to the west of Houston)

PEP Program Article

Self-serving bump - aw come on, can you blame me.

A new article is up at the PEP Program website. This one by someone familiar... me.

Go have a read and take a look around.

Houston Hemophilia Walk

UPDATE!! -- We've passed our original goal of $1,000. Thank you one and all!! So now we're going for a new goal of $2,000 -- Help out if you can, details below.

Holding out the tin cup, passing the hat...all that. We're raising money for the Lone Star Chapter of the NHF in the 1st Hemophilia Walk. Houston is one of only 5 cities hosting these inaugural hemophilia walks this year.

Hold on a minute...need to watch Michael Phelps go for gold number 8. Yes! Simply amazing! 8 gold medals, 7 world records, Unbelievable!

Now back to our regularly scheduled programing.

Our team is the Killer B's for Brogan and Buchanan. My Jack and his friend Brandon Buchanan.

Brandon and Jack

Here's the letter we're sending out:

Hi friends and family,

How often do you stub your toe, have a bad fall, or bite your tongue? Chances are these are common experiences in your life. Though painful, they are not life threatening. However, for someone with a bleeding disorder, these events can mean another infusion or a trip to the ER. As you know, our son Jack has severe hemophilia A. He gets three infusions a week to prevent internal bleeding. The cost of the clotting factor that he infuses is about $1.20/unit and he receives over 1900 units (3 times a week). As he grows, so does the amount he will need. He has recently started infusing himself; he learned to do this at hemophilia camp this summer.

The National Hemophilia Foundation (NHF) is an organization dedicated to providing families with the education and support they need to deal with the challenges that come with bleeding disorders. We hope to one day find a cure for this condition, but in the meantime will you help us to continue the work of these organizations?

On Saturday, September 6, 2008, the Lone Star Chapter of the NHF will be participating in a nation-wide fundraising and awareness event. The 1st Annual Houston Hemophilia Walk will be held at Minute Maid Park. Registration begins at 9:00am, with the 3K walk beginning at 10:00am.

We would be honored if you would consider walking with Jack's team, "The Killer B's". You can register online at http://www.active.com/donate/hemophiliaWalkTX/PBrogan2 . There you will be able to click on 'register for this event' in the black tool bar. It costs nothing to walk. If you are not able to join us for the walk, but would like to donate instead, you can click on an amount in the yellow box on the right side of the page. There is no amount too small.

Thank you for your support and we hope to see you at the walk!

Sincerely,

Allison Pohl and Pat Brogan

Happy St. Brogan's Day

Really!! Who knew? Bumping around the web a little bit today and came across this. Thomas Brogan is no relation I know of, but, you never know.

Apparently there's t-shirts and other gear.

The background on St. Brogan is a little thin and sketchy (kinda like me, although I can no longer be considered thin). See here and here.

Oh, well, raise a glass; Slainte!

Where's the parade?

Back to school...

for Jack and 1st day of school for Carrick. Jack starts 3rd grade and Carrick starts kindergarten. I'd like to think that Jack will look after Carrick and help him out. But he probably won't. More likely he'll try to ignore Carrick. But that's o.k. the little guy will do just fine.