July 2013

Helping Hands

Laurie Kelley July 29, 2013

Times have been tough these past two years. I’ve been in business in the hemophilia community for 23 years and have never had so many call us for financial assistance, from helping to
pay tuition, to paying electricity bills, even the cost of gas to get to clinic.

Everyone in hemophilia should know about a program from Hemophilia Federation of America (HFA) that can help community members facing hardship.

HFA is a national nonprofit dedicated to advocating for, assisting and representing the bleeding disorders community.

Their “Helping Hands” program provides urgent assistance to individuals and families in the bleeding disorders community who are in a crisis situation. In 2011-2012, HFA distributed over $240,000 to about 470 households to help with expenses such as: housing, transportation, utility bills, and car payments.

And don’t forget your membership matters! In 2013, 100% of membership dues will go directly to the Helping Hands program. Become a member
today to help YOUR blood brothers and sisters in need: http://tiny.cc/irbs0w

Good Book I Just Read

Defending Jacob by
William Landay

Set in a suburb of
Boston, this novel tells the tale of Andrew Barber, a respected assistant
district attorney whose 14-year-old son is accused of murdering a classmate. His
world is shattered, his career is ruined as he prepares to fight the very court
system he has worked in for 20 years, to protect the mysterious and reclusive
son he loves. But the neighbors, courts and media are out for blood, someone to
blame, and all evidence points at the son. How far will Andy go to protect his
son, and discover the truth? I learned a lot about legal terms and matters, and
it’s a riveting tale, well told, with a twist in the end. A great
sit-on-the-beach book. Three/five stars.

Theme Park Summer Fun

Laurie Kelley July 22, 2013

The story in the news about the woman who died at a theme park in Texas got me thinking of rerunning one of our articles about risks for kids with hemophilia at theme parks. Here is a great rerun from the August 2002 issue of PEN, written by Dr. Richard Lipton.

Summer is here, and millions of families will seek adventure and thrills at theme parks like Six Flags, Disney World or Universal Studios. What a wonderful day a family can have at a theme park! Kids and parents love the rides, water slides, entertainment and general excitement. Are there any special safety concerns or precautions for families with a child with hemophilia? Yes!

Think of a theme park as a very big playground, but with an atmosphere favoring less parental control—a setting that can lead to impulsive behavior by children.

Imagine yourself at a typical theme park. You’ll have general health concerns. Parks can be crowded, hot and sunny—so apply sunblock and drink plenty of water.

Theme parks have paved surfaces, harder than public playgrounds, and filled with children running. Your child needs to wear appropriate footwear. Flip-flops or “Tevas” might be suitable for water activities, but sneakers are safer for walking and running.

You’ll also have concerns specific to the theme park you visit. “Mind Eraser,” “Shockwave,” and “Nitro”—what about these special high-end rollercoaster rides? Riders are frequently subjected to changing speeds that result in “G-forces” similar to those experienced by trained, appropriately suited and restrained combat fighter pilots. Your child becomes “Top Gun” in shorts and a T-shirt! Parents should remember that any person can experience head trauma on these specialized rides.

How is the head affected by a ride like the Mind Eraser? Recall that your brain is surrounded by fluid; it is floating inside your skull. This arrangement cushions the brain, and reduces movement, protecting

your brain from direct trauma and sudden shifts in skull position. It works quite well in our daily activities, and in automobiles (as long as we’re wearing a seatbeat). Now imagine speeding over the crest in a roller coaster. All of a sudden you’re weight- less, like an astronaut—this is called a Negative G- force. (You’ll have no trouble recognizing this moment, because every- body screams!) Then, after the coaster speeds down and resumes its climb, you feel your backside being pushed into the seat. It feels like the force of gravity has suddenly increased. This is a Positive G- force. Although your body is restrained, high G-forces could exceed the protective cushioning of fluid surrounding the brain, and could cause injury.

Interestingly, this year New Jersey became the first state to seek legal restrictions on the maximum allowable G-forces on amusement park rides. The regulations result from concerns raised by physicians about the association between neurologic damage and high G-forces on these rides. Certainly, such injuries occur very infrequently, but serve as a cautionary note to all riders of high-end roller coasters—with hemophilia, or without.

My advice? Take some precautions. Level the playing field by giving your child a prophylactic infusion of factor the morning of your visit to a theme park. Yesterday’s dose is not sufficient! Don’t wait until your child reports the symptoms of a bleed—it may be too late. Besides, your child is not going to report the flop he took running to the haunted house until you’re stuck in traffic on the long, long ride home.

Infuse first, then have a great time!

Dr. Lipton is the Physician in Charge of the Hemophilia Treatment Center at the Long Island Jewish Medical Center. As a United States Air Force Physician (1966–1968), Dr. Lipton knew several fighter pilots, who took him on “joy rides” (with lots of G-forces) that more than fulfilled his childhood fantasies.

Great Book I Just Read

The Haunting of Hill House by Shirley Jackson (Kindle)

This could be America’s greatest ghost story novel. Two women are summoned by Dr. Montague, a paranormal investigator, to Hill House, a deserted Victorian mansion, once owned by Hugh Crane, whose wife died in a horse-drawn carriage accident coming up the long road to the house, on her first trip there; Hugh’s daughter was raised there in isolation, and eventually became an old woman, dependent on a caretaker, who abandoned her one night while having a romantic liaison–the elderly daughter died. The house is now “vile” in appearance and rumored to be haunted. The women are invited to stay for a week, to see if their presence may stir up any ghostly activity. Each women is believed to have some sort of experience with the supernatural. Theo is sharp, attractive, sophisticated and sure of her abilities; Eleanor is a plain spinster, shy and awkward, who spent the last 11 years caring for her sick and demanding mother. For Eleanor, this is the most exciting and significant thing she has ever done in her life. And so the story takes off, chilling and psychological. Is the ghost of the dead caretaker, whose life mimicked Eleanor’s, walking the hallways? Who is responsible for the pounding on the walls at night, the chilling laughter, the handwritten messages on the wall? Is Eleanor crazy, or is the house haunted? Skillfully written, a pager turner and a deep psychological profile, the book has justly earned its kudos. The 1961 black and white film “The Haunting” by the famed Robert Wise is truly one of the scariest movies I have ever seen… and yet “nothing” actually happens… or does it? Four/five stars.

Carnival Time!

Laurie Kelley July 15, 2013

I spent 10 days in the Dominican Republic recently, and the highlight was our annual camp for about 40 boys with hemophilia. If you read my blog from last week, you will see that many of our boys live in extreme poverty. As founder Haydée de Garcia, president of FAHEM, the national hemophilia organization said, “Camp for them is like going to Disney World for an American child with hemophilia.”

Camp–no matter how grand (like Paul Newman’s camps) or small–like ours–is magical for any child but especially a child with hemophilia. Here, they get to be a regular kid, able to do so many things normally not allowed or even conceivable. Our boys played “baseball,” using their bare hands and a rubber ball, but with what competitiveness! (Baseball is a national passion here) They made masks for carnival, the theme of the camp. Swam in a huge pool, did competitive ball games, had rap sessions with a counselor, watched movies, and best of all… got factor. The DR bought no factor last year, at all. What they had came from donations, like from Project SHARE, our humanitarian program. All the factor at camp this year was donated. And without factor, there would be no camp.

We had a few surprises, like a visit from baseball great Stan Javier, formerly of the Mariners and Giants. And on the last day, Carnival! After breakfast, we heard horns blowing, percussion, and across the lawn came a carnival crew, and everyone got in on the action. No one can party like the Latinos can!

I’ve watched this camp grow from an idea on paper, to a first attempt in 1999 to now a world class camp. It’s a model for anyone running a camp for kids with hemophilia in developing countries. My boys, who were ages 8 and up in 1999, are now in their twenties and are counselors–and tower over me! They love that I return to camp when I can, and I in turn love to be there, and love them. They teach me all the time about reliance, appreciation and giving back. Some of them were in constant pain at camp this year, discernible only by a serious look on their faces when they thought no one was looking. They do without: ice applied to a joint instead of an infusion of factor. But nothing dims their joy. We should all live so in the moment, with such joy.

(Thanks to Save One Life for a donation to help meet camp expenses! Many of our beneficiaries attended camp. If you want to help with camps like this,consider making a donation to our camp campaign going on now at www.saveonelife.net Gracias!)

Walking In Their Shoes For A Day

Laurie Kelley July 9, 2013

Sweltering heat, 100% humidity, long rides, sweat dripping
down our necks, back, arms, stepping gingerly through mud, grass, dirt… this
job ain’t glamorous or for the needy. Well, yes, it is for the needy; needy as
in being a child in poverty, motherless, earning a dollar a day, not having
enough to eat. These are the children with hemophilia we visited today outside
of Santo Domingo, in the Dominican Republic. It’s a day when you put your own
needs aside and realize just how shockingly removed we are from how most of the
world lives.

I first attended CampYo Sí Puedo (Yes I Can!) in Lomas Linda, just outside of Santo Domingo, the
capital, for the past four days. I was going to blog about this amazing camp
tonight, but today readjusted our reality to the real reason we exist: to get
sponsorships for deserving children in desperate situations.

My day started with a shocking jolt at 8 am, after returning
from an hour-long run near the beach in the growing heat. From Tanzania, Dr.
James emailed me that Cuthbert, the little boy to whom I gave Tanzania’s first
home infusion, died of a GI bleed that could have been treated with factor
concentrate. We have been helping Tanzania for the past 6-7 years, and Cuthbert
was one of the first children with hemophilia I met there. His loss is
devastating.

But we headed out to visit the living; the children whose
needs still must be met. Visiting the children in their homes, we see how much
they lack, in the simple things we expect: clean water, sanitation,
transportation, nutritious food, books, imagination, education. Add to that
hemophilia and their lives are a daily struggle to survive, like Cuthbert’s.
Today we visited five families in about six hours. I’ll only mention two for
now.

At 10 am we rumbled along a crumbling, stony road in
Haydee’s SUV, built like a tank thankfully, to a cluster of wood shacks. The
farthest one housed the Ciriaco family. Huge plants fringed the walkways and
doors so that we had to duck sometimes. The house is made of wood slats, with
plenty of gaps in them to let sun shine in like laser beams in the morning, and
mosquitoes in at night. There are no screens, but the family does have
electricity as evidenced from the jury-rigged wires criss-crossing the shacks.

The family enjoys watching videos from camp on my iPhone

The family greeted us warmly; Luis Miguel, the son with hemophilia, sheepishly
tagged along, though he had just seen us at camp for four days! Why shy now?
His sister Nicole was not shy at all. Pretty in her beaded hair, she readily
hugged and snuggled. We all walked down to the river’s edge, where Luis
Miguel’s mother explained that the river rose in April of 2012 (11,000 impoverished
people had to relocate!) and completely flooded their meager home. They lost
most everything they had. I was told that the government came, helped for about
four days, and left. There’s no compensation, no one to sue, and certainly no
insurance. You are simply in the hands of fate.

Because the family was registered with Haydee’s
organization, the Fundación Apoyo al Hemofílico (FAHEM), they received food, clothing and support.
We snapped some pictures, interviewed the family a little then had to move on to the next three families.

At the end of the day, we drove to Wilson’s house. We drove far away from the city, on decent roads, until we started seeing less businesses and homes, and more shacks, colorful laundry strung to dry, overgrown plants and lots of chickens. Rural Dominican Republic. After asking numerous people for some sketchy directions, we eventually came to the right barrios and saw Wilson waiting by the side of the road. He hopped in, exclaimed, “Hello Laureen!” (in English no less!) and then showed us how to
navigate the dirt roads to his home.

It’s as pretty as a home can get in rural poverty. Lime green, little front porch. Inside, one giant room, divided with a cloth hung from a line, to serve as a wall. Wilson is 10, and wants someday to be a lawyer. He’s factor VIII deficient, but looks in good shape. Indeed at camp, he stole our hearts with his charm and smile. His mother Evalisa was present, and little by little, children and curious neighbors peered at us from their porches. Wilson has a sponsor already, new, and I can’t wait to share photos with him. As we chatted, little children ran about, holding hands, posing for a quick picture, which I then showed them in playback to their great amusement. Giggling, curious and trusting, I’m sure they haven’t seen our likes before!

I distributed some donated gifts: jewelry for the mom and grandmother, toys for the kids, and an envelope with some money for the mother. Wilson is a born businessman; he ran up to Vincente, a father of a child with hemophilia who has volunteered with FAHEM for years and who is a lawyer, and presented him with a beta fish…. in a whiskey bottle, sans whiskey. Vincente paid him a few pesos, and off we went with our fish in a bottle. I suggested we call him “Wilson,” and asked if the fish had hemophilia too.

Haydée, Vincente, and I stopped at a mall, and as we climbed out of the SUV. We strolled through the mall with our whiskey bottle, the fish sloshing about inside, causing a few security guards to turn their heads. We had a delicious lunch of chicken, discussing all the kids we saw today, with Wilson the Fish in the center of the table. Will the kids have a future? If we can get them sponsored, and continue to
get factor into the country. Well, we accomplished our goal to visit five families today, which was exhausting, but we didn’t exactly walk in their shoes for a day. It was only for a few hours, and it left us tired and contemplative.

We parted—Vincente with Wilson the Fish and I with tons of photos, visual images burned in our memory, and much work ahead of us. If you want to sponsor one of our five kids visited today (and we can show you great photos!) please visit www.SaveOneLife.net

Did Yeats Have Hemophilia?

Laurie Kelley July 1, 2013

Richard Atwood, our colleague from North Carolina who researches all things in print and media hemophilia, has uncovered a great literary question: did William Butler Yeats, the Irish poet, have hemophilia?

He looks to Oliver St. John Gogarty, who published in 1963 William Butler Yeats:
A Memoir (Dublin, Republic of Ireland: The Dolmen Press. 27 pages). Richard provides a summary and comment:

Oliver St. John Gogarty, an Irish poet and physician, intended to write memoirs for nine of his famous friends. Regrettably only three were written before his death in 1957. Luckily he finished the memoir about William Butler Yeats (1865-1939), an Irish poet and dramatist. Gogarty mentions some of the accomplishments by Yeats, such as receiving the Nobel Prize and serving as a foundation Senator in the Irish Free State. He also states that Yeats disdained science while delving into the occult, mysticism, astrology, magic, seances, ghosts, and the spirit world. Gogarty praises Yeats for his poetry, especially his “intensity” of phrase by using the pouncing or surprising word. (p. 24). According to Gogarty, Yeats has the physical attributes of being 73 inches in height, being tone deaf, and having poor eyesight. Also that after undergoing the rejuvenating operations, Yeats claims to have been greatly benefited. In addition, Gogarty relates another physical condition when he and Helen Wills, a tennis champion, visit Yeats in a rented country home: “To our disappointment the maid announced that Mr. Yeats could not leave his room on account of a nosebleed. I knew that he was inclined to haemophilia. I ran up the stairs to his bedroom only to find that he had cut himself with a razor at the edge of his nostril as he was preparing to look his best.” (p. 17).

The brief memoir includes a photograph of the medallion, or plaque, of Yeats cast by T. Spicer-Simpson and a photocopy of a short poem hand-written by Sir William Watson that seems to refer to Yeats. The personal observation by a close friend, who also happens to be a physician, that Yeats is “inclined to haemophilia” is still not a medical diagnosis, though this raises serious suspicions by being from a primary source. Gogarty provides no dates for his observations, but the medical events he mentions probably occurred in 1934. The memoir may not add much to the understanding of Yeats and his poetry, but it provides an interesting personal perspective. No information is provided on the author.