February 2011

The Bloody Movies

It’s Oscar time! Tonight, Hollywood celebrates top movies and actors of the year (oh yeah, The King’s Speech; who can resist any movie with Geoffrey Rush?). I decided to see how many movies had “blood” or “bleed” in the title, with a reference somewhat to hemophilia. There are movies about hemophilia—which we have written up in PEN—but there are no commercial movies named for hemophilia.

Of course, if you have teenagers in the house, you’ll know that most movies with blood (937!) or bleed (20) in the title are of the Horror genre. Like Blood-Sucking Freaks or the Bloodsucking Pharaohs in Pittsburgh or Bloodsuckers From Outer Space; I kid you not. It’s best to avoid any movie with “bloodsucker” in the title. We’ll try to avoid those. In fact, let’s give these our own genres and synopsis:

Bleed (2002), starring Debbie Rochan. Thriller.
A single mother takes her child to her HTC to treat his bleed, when she meets a stranger who offers her a job—to deliver a briefcase to Mexico City, no questions asked.

The Bleeding (2011) starring Vinnie Jones, Sci-Fi.
A child with a mysterious blood disorder stumps a colony on Mars in the year 2099, as hemophilia had been wiped out for fifty years. Is he a mutant, or some secret experiment?

Bleeder (1999) starring Mads Mikkelsen. Thriller.
A spy with a bleeding disorder finds it tough to complete a mission to assassinate a rogue dictator in the Middle East when he runs out of factor in Oman.

Bleeding Through (2004) no actors named (never a good sign). Comedy.
Hemophilia buddies on a motorcycle trip from Boston to Denver realize one is not adapting to his prophylaxis regimen and has break through bleeds. With each stop to get treatment, they pick up more cyclists to join their trip, and create a convoy, unaware that one of their new friends in on the FBI’s Most Wanted List.

Bleed With Me (2009) ditto
Sequel to Bleeding Through. Hemophilia buddies on a road trip from Boston to Miami decide to skip the HTC again and just bleed it out together. They don’t get far.

There Will Be Blood (2007) Daniel Day-Lewis. Drama.
A rebellious teen with hemophilia decides to run away from home and refuses medical treatment, when the girl he loves rejects him.

Book of Blood (2008) Sophie Ward. Drama.
A mother of a child with hemophilia decides to write a book about hemophilia, which changes her life. Hmmm.

Captain Blood (1935) Errol Flynn. Comedy.
A man unlucky in love and work tries out to become the superhero icon for a new factor product, becomes a national figure, and finds that wealth, fame and attracting the daughter of the president of the United States brings on situations beyond his wildest dreams.

Camp Blood (1999) Vincent Bilanco. Family.
A camp counselor with hemophilia falls in love with a girl with von Willebrand disease at a family camp, a love which is forbidden.

Blood in, Blood Out (1993) Benjamin Bratt. Sci-Fi.
A vampire with hemophilia needs human victims to keep his hunger—and bleeds—at bay.

Blood for Blood (1995) Lorenzo Lamas. Sci-Fi.
An experiment goes terribly wrong when a scientist with hemophilia who pioneered a permanent cure for hemophilia transfers blood—and something else—from a mutant to himself.

The Bloody Brood (1959) Peter Falk. Family.
A religious family decides not to let hemophilia stop them from having the big family they always dreamed of. They get more than they bargained for!

Bloody Movie (1987) Alan Hale Jr. Comedy.
Alan Hale Jr. returns as Skipper and this time is stranded on a deserted island with 25 members of a hemophilia nonprofit after their fundraiser at sea hits stormy weather. Hey, it could happen!

Share your own movie titles and captions, and enjoy the Oscars!

Great Book I Just Read
Race to the Pole by Ranulph Fiennes

A magnificent book about a magnificent man. Ranulph Fiennes is a living polar explorer and adventurer, and knows his topic well, having suffered through some of the worst situations ever. Here, he tells the fascinating tale of Robert Falcon Scott, famed British explorer, who reached the South Pole in 1914 under brutal conditions… only to discover Norwegian Roald Amundsen had beat him by just days. Fiennes does his homework flawlessly, citing excellent references, and is a superb writer. He challenges the legacy that Scott was “old school British,” and his inflexibility at doing things the military way led to his demise on the return home. His body lies there to this day. He delves deeply into Scott’s personality, ambitions and motivation, revealing a complex and disciplined man who learned to be an exemplary leader. You will writhe when reading the passages of how these explorers suffered, and yet how eloquently they wrote, even as they lay dying. Most valuable and clever is how Fiennes tears apart, through careful analysis of the literary world and British culture, the “myth” that developed which left Scott unfairly with a poor legacy. Excellent book and highly recommended. Four stars.

iPhone App Helps in Diagnosis

Here is the latest in very cool applications for the iPhone. I don’t think I have yet seen one that helps in the diagnosis; I believe this is the first. This is from Novo Nordisk. This app does hematologic testing, including prothrombin time (PT) and activated partial thromboplastin time (aPTT) tests. This resource has been developed to help you diagnose coagulation disorders. Here, you have access to the following features:

Lab Value Analyzer: Input the patient’s coags, and the clinician receives a list of possible diagnoses
Diagnostic Algorithm: this walks a clinician through step by step to narrow the possibilities of the diagnosis
Acquired Hemophilia

Check it out at http://www.coagsuncomplicated.com/Home.aspx

Great Book I Just Read
Annapurna: A Woman’s Place by Arlene Blum

Annapurna is the 10th highest peak, and renowned for avalanches. It takes extreme mental toughness and physical endurance. Of the 4 successful ascents of Annapurna only 2 men had reached the top each time. Arlene Blum became the first woman to ever summit it, and led an all woman team. She was met with skepticism and ridicule, and also great enthusiasm. This book details the preparation and the journey, and her struggles as a leader. It’s a great book about leadership. I had my own doubts reading it, as Arlene seems so insecure. But she is candid, and in the end, her leadership really shines. “My scientific training contributes to a natural tendency to see all sides of an issue. I tend to agonize about the full range of possibilities, and even after I’ve made a decision, to worry interminably about whether it was the right one.” Sadly, two women climbers on the team died when they chose to strike out on their own, against the wishes of the others to summit after Arlene.

Arlene Blum has played a groundbreaking role in US women’s mountaineering. She led the first women’s team up Mt. McKinley; was the first American woman to attempt Mt. Everest; and has played a leading role in more than 20 mountain expeditions worldwide. Three stars.

A Nose by Any Other Name

There’s an old saying about making lemonade when life hands you lemons; Steve Riedle must have made gallons. Here is a guy with hemophilia with a story, and who is trying to make life better for others. He is the inventor of NoseBudds, clever gel cold packs that are tailored for the nose. They are great for anyone with nosebleeds, but especially for hemophilia and von Willebrand disease patients who have bleeds.

Steve is the youngest of 11 children: five boys with hemophilia. Three brothers died of hemophilia. Two brothers never even used cryo or factor and died of bleeding. The last one to die was 19; Steve was 17 at the time. Just try to imagine how to deal with that kind of loss. “That was a dark time,” Steve writes, “but seeing the new generation of kids running around being much better made me feel better. Still I think of all those who I knew and are gone now. Mostly the kids, because they never knew normal because of [being] outcasts.”

Steve developed NoseBudds to make a difference in the lives of others. Check them out at www.nosebudd.com. They are inexpensive at $7.95 and can help with bleeds. “I’m trying to make a point with Nosebudds– to make a stand, keep resilient, and even with all the pain and loss something great can be achieved. Be a victim of hemophilia or a warrior, we have the choice.”

You can be friends with Steve on Facebook!

Good Book I Just Read
Mind Over Matter by Ranulph Fiennes.
In November 1992, the world’s “greatest living explorer” made it into the Guinness Book of World Records by crossing Antarctica with Dr. Michael Stroud, unsupported, alone, covering 1,350 miles in a hellish 95 days. Toting sledges weighing 450 pounds, in temperatures as low as 85 degrees below zero, suffering starvation, frostbite and everything else you can imagine, these two men didn’t achieve their goal to completely cross but broke the world’s record for longest unsupported polar trek. It is a riveting account and remarkable, stunning achievement. But you will ask why? To what purpose? There was no record or achievement other than to see how much suffering the human body can stand. Fiennes is blunt, lacks charm or wit, and is very critical of his partner. Makes you long for the diaries of Mawson or Shackleton, where dignity and respect seemed to matter most. They raised millions for the British Multiple Sclerosis Society, and I found the book inspirational, though a bit harsh on Stroud. Fiennes includes an excellent set of Appendices on the Antarctic, including routes, equipment, mileage and history of exploration. Three stars.

Biru’s Journey

I just came home from the cinema, where I watched The Way Back, a film by Peter Weir, my favorite director. It’s based on the true story, documented in the book The Long Walk by Slawomir Rawicz, which I’ve read, of a young Polish man who is sent to Siberia during World War II, and endures incredible suffering. Just the train ride alone to Siberia was miserable, even for the guards. Eventually he breaks out of the camp, and walks from Siberia all the way to India. Through Mongolia, China, Tibet, over the Himalayas and finally to India, burying his fellow camp-breakers along the way. What never waivered was the young man’s humanity, his forgiveness, his hope.

You don’t need such dramatic storytelling to see such heroes. They exist right in our community. One is Biru. Now, we help scores of people with factor, and sometimes we don’t recall every person’s name. But there are some you don’t forget. This is what I read in India’s annual report:

“Posing for a photograph is one thing that Biru likes. He has lived with hemophilia for over 30 years, fulfilling his role of being the elder son in a family that has a poor, jobless father; a bed-ridden, diabetic mother; a sister in school, and another hemophilic brother.

“Life, however, takes its turns. And more often than not, they are sharp. This picture taken on July 20, 2010 is perhaps one of the last few pictures that Biru posed for.

“Today he is preparing for a big compromise, which would mean that if he has to survive, he has to pose without a leg throughout the new life this would get him!

“It is our choices, far more than our abilities, that show what we truly are!

“For Biru too, there are choices: One, he can die of hemophilia, or two, he can sacrifice one of his legs, and live like that forever. He has chosen to live because of a simple reason: ‘If I die, there would be no one to feed my family. I have to live, even if my leg goes away. Once I’m healthy, I may not move around, but I will fly high with my determination and hard work, and take good care of my family!’

“Some five years ago, a hematoma developed in Biru’s leg. Recently, when this brilliant Tinsukia boy secured the first position in Master of Science, the hematoma burst, leaving him completely bed-ridden in a painful condition. The severity is such that he cannot move, or even speak. Given this condition, the coaching classes he used to run are also closed down. Doctors have advised him a transfusion of at least 3 units of blood every day. This is to prepare him for the amputation of his leg, which, should be done as soon as possible so that further pain and suffering can be lessened.

“The operation will require at least 100,000 IU of factor, in addition to hospital costs. Biru is moving to Mumbai soon to part ways with one of his legs that helped him go wherever he wanted to. Sure, this will be a loss, and cause him great pain. However, his hopes are still alive. He is composed and determined as his eyes are fastened to the skies. ‘This is happening,’ Biru says, “because I’ve made the right choice in life!'”

What a beautiful attitude! Project SHARE will be helping with the factor to make this operation happen. Our colleagues in India are fundraising so he can pay for the operation. And just a few weeks ago, his mother died. But Biru’s spirit is strong. It has to be, to endure the mountains he must climb.

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