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Sunday, October 25, 2009
This week I am off to the National Hemophilia Foundation meeting in San Francisco, and I thought an historical look at blood might be in order. I can't think of a better story about blood than that of a madman running naked through the streets of Paris in the 17th century. True.
Chapter 1 of the wonderful book Blood by Douglas Starr starts with poor Antoine Mauroy, who suffered “phrensies.” From time to time, he would take off his clothes, run through streets and set fires. Eventually, doctors experimented on him to try to cure him. Mauroy became the guinea pig in an experiment that forever changed medicine. In 1667 Jean-Baptitste Denis, physician to king Louis XIV, transfused half a cup of blood from a calf into Mauroy. He hoped the "gentleness" of the calf would infuse as well. Despite the discoveries of the Renaissance and the advances made in science, doctors still believed the blood somehow carried the characteristics of the creature, a concept known as “vitalism.” For example, a stag’s blood carried courage; a calf gentleness. Since the ancient Greeks, the body was not yet viewed as a system, and doctors knew nothing of hormones, genes or viruses. It would be 200 more years before they discovered that water transported disease! In the 17th century, doctors believed that in the "humors": phlegm, choler, bile, blood. The Greeks believed that good health meant maintaining a balance of the humors in the body, so draining blood and purging digestive system should help. This is where bloodletting as a medical treatment evolved.
Other doctors and researchers dabbled in finding out the secrets of the blood. William Harvey found valves in blood vessels, which led him to think that the body might be a system, more mechanical. Christopher Wren (the famous architect whose beautiful cathedrals I just glimpsed when I was in London last week) and Robert Boyle, founder of modern chemistry, dabbled in circulation. Richard Lower tried transfusing blood from one dog to another: he discovered how to transfuse from an artery into a vein and it worked.
What happened to our madman? Antoine Maury died from the procedure. What doctors didn't know is that proteins in the blood from one animal--even from another person-- are not always accepted by the body. The immune system may attack the foreign proteins. Dr. Denis was accused of murder. He in turn sued Antoine Mauroy's widow in 1668 for slandering his reputation. Turns out Mauroy actually died from arsenic poisoning-- by his wife! Still, the French Parliament's banned all transfusions involving humans. Similar actions follow in England and Rome. And 150 years would pass before it was tried again.
Blood-- it has a colorful past! And worth reading about. Be sure to read Blood by Douglas Starr.
Friday, October 16, 2009
Following up on the news that the Royal Disease, hemophilia, apparently is factor IX deficiency, comes this delightful report from my friend, Richard Atwood, self-made historian about all things hemophilia. He also happens to be president of the North Carolina Chapter. While Richard does not have hemophilia, he is fascinated by hemophilia and keeps what must be the most extensive listing of hemophilia in literature and history.
So he sent me this message: "Located on the northern California coast in Fort Bragg is the North Coast Brewing Company, proud purveyors of the award winning Old Rasputin Russian Imperial Stout. Rasputin was the consummate hemophilia health care provider, surrounding himself with wine, women and song, and then applying his hypnotic stare and laying on his hands to ease the symptoms of a hemophilic bleed.
Check out the brewery website -- www.northcoastbrewing.com -- to view the available merchandise for the Old Rasputin 'Never Say Die' t-shirts and hats, and then enjoy the brew by imbibing in San Francisco."
Do you know why the motto is "Never Say Die"? If not, and you have hemophilia in your family, look it up! Very funny.
The annual NHF meeting is in San Francisco from October 28-31. Halloween, Rasputin, beer... sounds like a good time! I'll be there-- at NHF, not the brewery. For now, I am in London, home of the royal family that gave hemophilia its royal disease tagline.
Old Rasputin Russian Imperial Stout Awards
2006 Stockholm Beer and Whiskey Fest
2006 World Beer Championships, Chicago
2005 World Beer Championships, Chicago
2004 World Beer Championships, Chicago
2004 Spring Beer & Wine Fest, Portland
2002 GABF, Imperial Stout
1999 GABF, Imperial Stout
1999 World Beer Championships, Chicago
1998 World Beer Championships, Chicago
1997 World Beer Championships, Chicago
1996 World Beer Championships, Chicago
1996 World Beer Cup, Imperial Stout
Sunday, October 11, 2009
You probably already know that hemophilia is referred to as the "royal disease." It's not, of course, but it was made famous by the royal families of Europe, some members of which had the blood disorder. Britain's Queen Victoria is the world's most famous carrier: she had nine children, but only son Leopold had the disorder.
Up till now, no one knew which type of hemophilia the royal line carried: A or B?
The results are in; the DNA results, that is. Britain's Queen Victoria's family had a severe form of hemophilia B. Our own University of Massachusetts' Dr. Evgeny Rogaev has conducted DNA tests on the remains of the Romanovs, the queen's Russian relatives. Victoria's granddaughter Alexis married Nicholas II, the last Russian tsar. Rogaev examined the remains of Prince Alexei, himself, who had hemophilia, and who was killed with his entire family on Lenin's orders.
This is one of history's most fascinating stories: how hemophilia played a part in the overthrow of the Russian dynasty and perhaps led to the Communist take-over. Communism helped to define much of world history following World War I.
Read Nicolas and Alexandra, by Robert K. Massie, if you want a fascinating look at history that reads like a love story. This was also made into a spectacular movie. And for children, I offer my own book Alexis: The Prince Who Had Hemophilia, free of charge through my website. If you have hemophilia in your family, this is a story you must know!
Sunday, October 04, 2009
I attended a neighbor's party this afternoon, to celebrate their son's Christian confirmation. While there, I chatted with other neighbors of ours, who I heard adopted a seven-year-old from Poland in June. I've been so busy this summer I had yet to meet him. And then, there he was.... beautiful child, happily playing with the neighborhood kids. His parents in Poland were alcoholics, and he was placed in the orphanage at age 5 with his siblings. There was evidence of abuse. And here he was, running on the lawn in the sunshine, healthy, eating cake and having a Sprite. What a lucky boy... which made me think of the Luckeys of Michigan, who we helped just two weeks ago with our fundraising email blast. Within 36 hours we exceeded the $10,000 goal, and eventually raised $17,000, to help them bring Lu Feng, an eight-year-old orphan with hemophilia, to his new home here in the US. And when I returned home, I had a message from Shari Luckey, asking me to share her letter this week with everyone reading the blog:
"This community, which we have been blessed to be a part of, has amazed us with their quick response to help our family bring Lu Feng home. We were so appreciative to you when we began this journey for your support and encouragement of our decision as a family to bring Lu Feng into our home as a son and brother to our three other children. From your initial email telling about this eight-year-old boy in China, your efforts to get factor to him and your pledge to get the word out to the hemophilia community that our family needed financial help to make this dream come true, you have never wavered from your commitment to our little boy in China. For that we will be forever grateful.
"When we began the fundraiser and the first donations began pouring in, we sat at the computer with tears of relief rolling down our faces. We never imagined that in less than three days, we would have not only met our goal, but surpassed it by more than 50%. With the funds that have been raised, we will be able to pay all of our remaining fees for the adoption, purchase our airfare, and have enough left to cover the majority of our living expenses (hotel, food and travel) while in China. Thank you does not seem sufficient to express our feelings of appreciation for those who donated and made this a reality.
"Currently it has been 63 days since China logged in our adoption paperwork as received. Typically it takes them around 90 days to process this paperwork, give or take several weeks. Once we receive the official travel approval from China we have a little more paperwork here in the states and then we arrange our travel and plan our trip. We are unsure at this point if we will be traveling in 2009 or at the beginning of 2010. We will keep you posted as the journey unfolds. We are busy at home preparing for Lu Feng's arrival. Bedrooms have been reassigned and redecoration efforts are underway. Two weeks ago, we purchased a bedroom set for Lu Feng with bed, armoire, desk and chair. We are excited for him to see his new home and his very own room!
"When Lu Feng is able to understand, we will tell him how cared for and loved he was from the very beginning of his life. Loved by his birth parents who had the courage when he was only a year old to leave him at the one place they knew could help him, the hospital; cared for by the Chinese doctors that gave him the best treatments they could with the resources available to them; cared for and loved by the caregivers at the orphanage on a daily basis; cared for by the hemophilia community around the world, who united to get him medication and help bring him to the United States; and finally loved by his forever family in Michigan, before we ever even met him. He has a mother, father, big brother and two big sisters, three grandparents, aunts, uncles and nine cousins waiting for him here in Michigan to love and support him from the day he arrives home and forever.
Again we thank you all for your support and will keep you updated as we move forward."
Dave, Shari and the (now) 4 Luckey Children
We look forward to hearing about the Luckey's adventure in China, and the homecoming trip, and to one day meeting Lu Feng, a very special little boy.
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