I’m on vacation this week in Arizona, till Saturday, when I will give a presentation to the Hemophilia Association, Inc. (Arizona) in Phoenix. Until then, I’m enjoying the beautiful, breath-taking sights of Sedona and the Grand Canyon.I’ve done a lot in two days: jeep ride through the back country of Sedona; hot air balloon ride at 5 am this morning over Sedona, hiking through Oak Creek Canyon, visiting the Sinagua Indian ruins called “Montezuma’s Castle.” This is one of my top three favorite states; the history of the earth is permanently etched in the buttes and mesas. Sedona is known for its electromagnetic activity and has attracted all sorts of psychics and vortex seekers, spiritual advisors and healers. Fascinating! Tomorrow I have a helicopter ride through the Grand Canyon.
I had an experience on Saturday that really speaks to this community and its dedication. For some strange reason, I was reminded of a scene from Animal Planet in which a baby African elephant was stuck in some mud. Her entire herd, including her mother, rallied around the calf to assist her until she was freed. Naturalists were amazed by how communal and compassionate elephants are.
So a 30-year-old man, not a baby elephant, called my cell phone at 10 am Saturday. “Jack” has mild hemophilia and has never self-infused. He also has no insurance and was in the middle of a raging psoas bleed. My son has had those and they are excruciating. I felt for him. I could not ship him donated factor through Project SHARE. The best I could do was to provide numbers: PSI, ACCESS, Hemophilia Hotline (Do you have those numbers handy??). He went to an HTC on Friday (his first time, I think) and was given some free factor, but not enough to last him a full week. Worse of all, there he was at home, still bleeding, and he needed an infusion that day. And he didn’t know what to do.
No way would I coach him over the phone on that. So I called some friends, and fellow “elephant” mothers: Natalie, long time friend, on one side of Florida; Linda, executive director of the Florida Hemophilia Association, another long time friend, closer to where the young man was located; Kim Madeiros, executive director of Factor Foundation of America, also close to where he lives. What happened was amazing!
Natalie took my call and wanted to help, but was too far away. Kim returned my call– from the beach. She was out having fun with her son and her 14-month-old daughter. No matter. Bleeding patients come first. I could hear the roar of the waves as she spoke, her children squealing in the background. And Linda called. She works now for Walgreens, and so could not infuse Jack, even though she has a 26-year-old son with hemophilia and lives close by. But, her brother lives only 10 minutes from where Jack lives and he is a doctor. Problem solved! Our hemophilia herd rallied around this man, and within one hour we had located a way for him to avoid the ER and get an infusion.
For Jack, this was the wake-up call of a lifetime. Talk about stuck in the mud. I can understand how those with mild hemophilia can go their childhood never learning to infuse. They bleed so infrequently that it’s not practical sometimes to teach them. But as these guys age, their past catches up with them. Jack confided that he had some joint problems. We know now that even one bad joint bleed can set us on the road to arthritis.
So Jack knows he has to make a plan: register with the Floria hemophilia organization; visit an HTC, not just any hematologist; learn how to self infuse; get newsletters and books and read about hemophilia; meet some of his community brothers with hemophilia; and find a way to solve his insurance problem. You just cannot be without insurance if you have hemophilia! Even if it means going on Medicaid. Fortunately, there are many programs to get help in our community.
Jack was lucky, but I wonder how many other young men in our country have hemophilia and who live on the fringe, not aware of the community around them. They are like baby elephants with no herd to care for them. I am proud of Natalie, Linda and Kim, who went out of their way to help, and thank them for showing so much compassion and dedication. These traits are what make our community as special as it is. And sorry for referring to you ladies as elephants; you know what I mean.
Book I Just Read: The Cure, by Timothy Brantley
“The Cure” alludes to us as self-healing organisms: “You are the cause, you are the cure.” Nothing here is new… at all. Brantley (who is not an MD, though he has “Dr.” in front of his name, as in PhD, obviously trying to lure us into thinking he is an MD) has consolidated material from Harvey and Marilyn Diamond, who had a great book in the 70s called Fit for Life (four stars!), from Pamela Secure’s Three Day Fast, from John Robbins’s Diet for a New America… ground-breaking books published years ago which already laid out his principles, which are not new or earth-shattering. Drink water. Avoid table salt. Consume mostly fresh foods. Stop eating pastries, bread, sugar, colas. Chew your food more. Drink water. See what I mean? Nothing original. He himself has a compelling story: his father was an exterminator, and his mother eventually died of cancer, leaving him determined to unlock mysteries of cancer and illness as they relate to our diet. Problem is, people have already done that. He’s endorsed by several Hollywood stars (hmmm, no doctors? No nutritionists?) and appears on TV talk shows. Why not? He’s handsome and hip. But original? Naw. Strangest of all, after spending 90% of the book telling us to eat food as “Creation” made them, he promotes his herbal pills and concoctions by asking you many, many times to visit his website, which is at least 2 years out of date. If you have never read any book on diet and illness, you might like this and I think what he says is true. But I’ve read better. One star.
It was a perfect day in Massachusetts– for skydiving! Today I jumped out, as they say, of a “perfectly good airplane” at 14,000 feet. On the way up, one of my friends couldn’t buckle up in the car as one of the seat belts was broken. This got me thinking about risk, our perception of risk, and reward. Most people would never go skydiving. They consider it dangerous, although your chances of dying in a car crash (from not wearing your seat belt) are much higher. Most people are shocked that I love to skydive, and not only that, that I encourage others as well.
For me, the rewards outweighed any perceived risk. Our perception of risk often determines our decisions. And things seem riskier 1) if we are not familiar personally with it–most people don’t ever skydive, 2) if it is sensational– and one skydive death makes the news, even while several car accidents will be overlooked, 3) if there is feeling of lack of control. We often “feel” more in control of our cars, and feel less likely to die in them.
This is my fourth jump.
There are about 3 million jumps in a typical year in the US, and about 30 deaths. This is about one person per 100,000 jumps. One website says “You would have to jump 17 times per year for your risk of dying in a skydiving accident to equal your risk of dying in a car accident if you drive 10,000 miles per year.” So odds are good you’ll be fine!
So what’s all this got to do with hemophilia? Some people are still very insecure about infusing factor concentrate. We are writing up a big article for the August issue of PEN about recombinant and plasma-derived factor concentrates. There are risks with any medication, and of course we had sensational deaths with hemophilia many years ago. This has made many fearful of products. But all US products are considered safe by the US FDA. These are among the most scrutinized drugs on earth, and we run a higher health risk eating at a fast food restaurant than infusing factor.
Sometimes it all has to do with perception. My perception of skydiving? The rewards far outweigh the risks. I feel the same about factor concentrate, too. Read the August issue of PEN to learn more about safety of our products, and if you ever want to shake up your world, get on the edge, have an adventure, try skydiving!
“Life is a daring adventure, or is is nothing at all.” Helen Keller
To me, there’s nothing more rewarding or satisfying than to travel through clogged urban streets and alleys, or jostling out on half finished roads, or sometimes no roads, in the broiling heat to visit hemophilia families in their homes. It’s like hunting for elusive diamonds. Amidst the trash, slums, poverty, sweltering humidity, you sometimes get an unexpected surprise that makes it all worthwhile. We had three of these happen to us in the Dominican Republic following camp last week.
Last Tuesday we visited a family right in Santo Domingo, the capital and the oldest city in the Americas. That’s right: this is where Columbus came four times during his voyages, to the island of Hispaniola. Dominicans are a beautiful blend of European, indigenous people, Africans (brought as slaves) and Spanish. Santo Domingo is home to the first hospital in the Americas, featured here, now in ruins.
I think we saw all these nationalities in the Torrres family. We met all three children: Alexander, Bryan, and Victor. Alexander and Victor had been at camp with us all week– but no one knew they were brothers! They have different last names, and this underscored the need to get the national registry more precise. The foundation FAHEM needs to be able to know that two children are brothers, not from their names, but also from their shared address.
The family lives in a two room dwelling that they rent. Rent is 40% of their $95 a month income. Try to think how to live on that with three kids with hemophilia! It boggles the mind. Only the father works. The young mother stays home, though there is little to do when there are only two rooms. She spends all her time with the children, shuttling them back and forth to the hospital. We are enrolling all three children in Save One Life.
On Wednesday, we started our day by visiting the de Jesus family, in the barrio La Cruz. It was about a 20 minute ride outside the capital. Rural poverty is quite different than urban poverty. In some ways it’s worse, because you lack plumbing and water. But then, there is space, more quiet, more nature. Damaris lives in such a place: a two room house with a tin roof that cooked the kids inside like a microwave. Haydee de Garcia, founder of FAHEM, the Dominican hemophilia society, and I were sweating by the time we hiked up the little hill to see her. With us was Haydee’s nephew Luiggi, who served as our translator.
No refrigerator, no bathroom, no running water. And yet, her tiny house was as clean as could be, with flowers on the small kitchen table, and the floor swept. The children were clean, and Damaris was carefully groomed. I was very impressed. Wilmer fussed, and I bent over to whisper in his ear. Maybe he can hear; he calmed down quickly and his eyes grew wide. My first job out of college in 1980 was working with mentally and physically handicapped children and adults, so I am used to being with and caring for these children. I’m not shocked and I don’t do pity, but I can empathize. Both boys have hemophilia. To bring Wilmer to physical therapy each week, Damaris has to carry him in her arms on the public bus, and then walk. As a result of his disability, Wilmer’s back is rigid and his limbs taut. It cannot be easy at all to bring him. I tried to hold him and it was nearly impossible. And she knows she has a lifetime of this ahead of her.
When we entered the house, it was allegedly to see Darling, Damaris’s five year old. What we did not expect was that her other son, Wilmer, age 18 months, had something wrong with him. Damaris told us that just in February, her baby with hemophilia had a spontaneous head bleed. She rushed him to the hospital, but he was in a coma by the time she got there. Now he was permanently brain damaged. He is blind and she does not know how much he hears. We were saddened by this tragic situation in front of us: Damaris and her husband earn only a little, have no luxuries at all, not even a fan to keep her baby cool. Inside the small house, the temperature was about 90 degrees, and there was no way to keep away the abundant and voracious mosquitoes that nibbled on our ankles.
But Damaris never complained and was humbly grateful when we told her we would find sponsorships for both boys, giving her an additional $40 a month. We first decided they needed a fan more than anything, to keep the baby cool. And we gave her the money on the spot. With many hugs and smiles, we left for the next family.
Further out into the country, we came to the De la Rosa’s house, a lovely but modest home on a dirt road. Three big boys with hemophilia: Anderson, Alexander and Anthony. Their sister, Angelina, sat in on the visit. The boys are all in their late teens and look fantastic. No joint damage, well developed musculature. It got me wondering. These handsome guys didn’t look quite–normal.
As we did the intake interview for Save One Life, I started asking about their extended family. One sister died in childbirth. Uncontrolled bleeding. Another died from her period. These boys don’t get joint bleeds but get a lot of nosebleeds. Haydee and I looked at each other: could they have von Willebrand instead of hemophilia?
We asked them to get tested at once so we can get their diagnosis straight. We have held off getting them sponsorships until this is done. But all in all, I was thrilled that we made the visit. They were diagnosed about 10 years ago, and could very well be misdiagnosed. Though the mother said that factor VIII concentrate “works” on the boys, it could well be that a product was used that contains von Willebrand factor.
I wish we had time to visit every patient, in every country. Home visits are the single most important thing I can do, and I love doing them. In these three visits we learned something new, something important, and something the national foundation needs to know. And the stories we hear make us humbled, grateful and better people. As Mother Theresa once said, “The poor have much to teach us.”
Great Book I Just Read: Krakatoa by Simon Winchester
One of the world’s worst natural disasters took place on Monday, August 27, 1883, when the small island of Krakatoa in the Sunda Strait near Indonesia exploded and destroyed itself. The blast– believed to be the loudest sound ever known–was heard thousands of miles away and killed over 36,000.
Author Simon Winchester is a geologist by education and trade, and now is an engaging writer. The book is not about a disaster, as much as it is about geology, and the science of volcanoes and the earth, which I found to be absolutely riveting. I never knew about this and I cannot wait to learn more about Mother Earth and from where this self-destruction originates.
You’ll learn about subduction and tectonic plates, about how only recently did scientists agree that the earth’s plates are moving! You’ll learn about early trade in East Asia, and about Indonesia in the 1800s. Winchester even ventures to say that the devastation, and the poor handling of it by the Dutch, left the door open for radical Islam to invite itself in. Indonesia is now the most populous Islamic country on Earth. How nature changes politics.
I loved this book, but I can critique it on two things: first, Winchester has a choppy style, and the book swings like a pendulum from this topic to that. Sometimes it seems that the eruption is only a blip, a thing standing in the way of his discourse on geology. The second, most disappointingly, is that although 36,000 died, you don’t hear about any of their stories. They are not as important as the rock, the plates, the volcanoes. I kept waiting to read about the people, what happened to the people? Hardly a word. A chapter about the victims—who were they? Who survived and how?– would complete this amazing story. Three stars.
I woke up Sunday morning at 6 am, after being serenaded by roosters all night long, who echoed their cries into the lush rolling hills outside Santo Domingo, the capital of Dominican Republic. Morning in the DR is lovely, with mist clinging to the trees, and the sun just started to bake the ground. After a chilly shower, I left my sleeping roommates (including my 15-year-old daughter Mary) to join about 50 boys with hemophilia to do morning exercises with “Cuchito,” their coach. If only we could wake up this way every morning of our lives!
After fun exercises and stretching, to get the boys’ joints limber, we marched– and I mean, marched–off to breakfast, always a healthy and hearty meal. The boys then prepared to leave their their DisneyWorld, their adventure land, their annual mecca. Packing, laughing, hugging–the Dominicans are known for their great affection towards each other–the boys reluctantly made their way to the bus and back to Santo Domingo.
But what a time we had! On Friday the boys were treated to a surprise: a visit from Marcos Diaz, world class long distance swimmer. Marcos gave a spellbinding speech poolside about discipline, perseverance and setting goals. He isn’t just a swimmer: he was born with severe asthma, and was not expected to ever do much in life. He didn’t let his asthma stop him, and set out to conquer it through swimming. We took many photos, and I think the adults were as excited to meet this national hero as the children.
We had carnival, arts and crafts and then, the Talent Show!! It was wonderful: full of music and dance, and unexpected but hilarious skits from the teens as they mimicked the adults–including the founder Haydee de Garcia, and me!
Camp “Yo sí peudo” has ended and was a magnificent, fun time for all. If you look at the logo on Ronnie’s yellow shirt, you’ll see the camp theme for this year: metamorphosis. It’s our tenth anniversary, and we’ve watched little children grow to men, from caterpillars to butterflies, ready to spread their wings. Knowing they have hemophilia, some disabilities, and even poverty, nothing could be greater than the smiles on their faces, and the hope in their hearts.