Yesterday I attended and spoke at the Hemophilia Association’s annual meeting in Phoenix, Arizona, at the posh Arizona Grand Resort. My congratulations to executive director Alexis Christiansen and her team for a great meeting. At lunch we had fun and thought-provoking exercises that helped get our brains warmed up and fostered teamwork. It was amazing how intensely we all got into solving puzzles, when given a challenge, a deadline and a team. I gave a presentation last night on my work in developing countries, and was proud to mention Arizonian Phil Hardt, who has been helping those with hemophilia in Columbia for years.
The meeting was well attended, with about 200 in the audience. A special session was held for those who speak Spanish, and with a water park just next door, there was something for everyone.
I have loved visiting Arizona this past week. I toured the state this past week, and flew in a hot air balloon over Sedona, went horse back riding, hiked down and flown a helicopter over at the Grand Canyon, stood on the rim of the biggest meteor crater, hiked up Sunset Crater (a volcano), walked through Antelope Canyon and drifted through Glen Canyon while on a boat in Lake Powell. Despite the severe heat, and much mileage, I could never complained: it was one of the best road trips ever. Arizona is truly one of my favorite places!
Laurie Kelley and Alexis Christiansen
I finished off my week by a visit tonight with a special lady: Susan Phillips, mother of a son with hemophilia. Susan’s other son, Mark, raised about $3,000 for Save One Life last year with a luau dinner party, enough to sponsor five children for three years! It was an honor to meet her, and a great way to end a fantastic week.
Good Book I Just Read The Life of Pi by Yann I rarely read fiction, only because real life is already so interesting, but this book came highly recommended. It was a bit hard for me to get into, but eventually, I became intrigued and loved it. I love animals and survival stories, and this was a perfect blend of both. An Indian boy, Pi Patel, is raised in a zoo; his father is the zookeeper for the Pondicherry zoo in India. Pi explains in wonderful detail the lives of the animals, while he himself searches for meaning by exploring different religions. Eventually his father sells the zoo and relocates his family to Canada. But while en route, their steamship sinks, and Pi finds himself on a lifeboat with a zebra, hyena, orangutan and a 500 pound Bengal tiger, and so his real adventure begins. Well written with striking imagery and a gripping 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.
What could be more fun than attending a camp with 50 boys with hemophilia in the summer heat with activities, great food, camaraderie, a talent show, carnival games, swimming pool and meeting a world class celebrity?
Doing it in the Dominican Republic, a tropical paradise.
It’s the 10th anniversary of a remarkable camp, “Yo si pudeo!—Camp “Yes, I Can!” I would dub this one of the best, if not the best, camps for hemophilia in the developing world. And I know what it has taken to make it so as I was here for the very first camp in 1999.
Back then, as I told the staff today, I came to the DR give direction and advice. Things like: you need volunteers. You need to raise money. You need to quarter the medical area, preferably out of the dorms. You need Plan B for when it pours rain for three solid days. You need name tags, a list of each camper, and above all, you need factor. And factor can’t be stored with the raw meat.
It was a long learning process, but with each camp, the experience got better and better. I was delighted in 2005 to attend my fourth camp and saw not only a medical room, but also one under lock and key, clean and organized, with fresh flowers in a vase. Not only did the kids have nametags, but they had groups, which were named, and each group assigned a teen counselor. The counselors were the teens who grew up in camp. Amazing!
Ten years of camp came together seamlessly to create an awe-inspiring four days. The children were dropped off by family members on Thursday at the Robert Reid Memorial Hospital in Santo Domingo, the capital. I eagerly greeted the children I had come over 10 years to know and love, and met some new ones. Once assembled, they were hustled off to a chartered bus for the quick 25 minute ride to Lomas Linda, a lovely, lush town nestle in the hills. This was an exceptional venue—a private function house, with a huge wrap-around veranda on which were oversized chairs and hammocks, enticing visitors to relax. Parrots in cages, a pool table, gorgeous tropical flowers, I felt like I was back in colonial times, at a governor’s house in some far reaches of the world. Except, of course, for 50 Dominican kids with hemophilia having the time of their lives.
All the children were assigned to a group, distinguished by a color, and had color bands around their wrists so there was never a doubt which group they belonged to. And each child had a nametag, so that we could all learn one another’s names.
The day begins at 7 am sharp with stretching on the lawn, headed by “Cuchito,” the coach and motivational man who showers the boys with love and discipline, and lots of fun. “Consado? (Tired?)” he shouts; “No!” the boys yell back while marching. “Alegre? (Happy?)” he shouts; “Si! (Yes!)” they reply. For 30 minutes they march, stretch, jump and loosen up, then eat a healthful breakfast. After that, there is pool, arts and crafts, rap sessions, educational seminars or rest times. The older boys look after the younger; and everyone is expected to participate, pitch in, and be the best teammate possible. It’s a successful recipe: the kids are attentive, behaved, active and happy.
One big surprise came when the kids were assembled outside the compound, eventually allowed back in through a series of “obstacles” as a group, with each obstacle an educational game about hemophilia at a table, staffed by maybe Dr. Rosa, their pediatric hematologist, or Dr. Joanne, the adult hematologist. When they passed through all the obstacles, they entered the main lawn of the compound, where there was a carnival! The center of attention was a huge, inflated slide which could and did hold up to 20 boys at one time, sliding, diving through tubes, climbing over inflated bars and then emerging at the end through two holes. No one seemed to notice when the clouds opened up and poured rain on everyone for about 20 minutes. Everyone beamed sunshine from within.
Many of the boys suffer permanent joint damage, and though young, walk with disfigured ankles, knees, and hips. I see Gabriel, who has a dazzling smile, trying to keep up with his friends by hopping-running-hopping-skipping-running to accommodate his crooked legs. He cannot be more than 15. Others have bleeds, and need to be reminded to stop playing and visit the medical ward. Though factor is a luxury here, being together with their hemophilic brothers is an even greater luxury, and one they don’t want to miss.
Today we came back to Santo Domingo, with stronger bonds and happier children. I hope to write more about the experience because so many wonderful things happened, and because it was our tenth anniversary.
I ended the day telling the staff that I used to come to the DR to give them advice on how to run the camp. Now I come to learn from them how to run a camp, and how to raise children with hemophilia when there are few luxuries, little medicine and no resources. Well, not no resources; the DR is rich in human resources, where creativity, hard work and dedication is changing the lives of so many children.
Check in again soon to read more and see the kids with their celebrity hero….
This will probably be my last entry before I head off for Boston tomorrow evening. I am in Ghana, a country of 25 million on the east coast of Africa, where it is blistering hot and crackling dry. Ghana enjoys a higher level of income than much of Africa, and it really shows in the good roads, efficient services, and many high-end cars zipping about. But hemophilia care? Still at a poverty level.
Laurie Kelley and Beth Mugo, Minister of Health, Kenya
First, let me wrap up the previous two county visits: a week ago I attended the charity fundraiser by the Jose Memorial Hemophilia Society-Kenya. It was amazing! The Minister of Health, Beth Mugo, attended and sat with us at the head table. Lovely lady; her husband Nick, former ambassador to France, attended the same small college in Asheville, North Carolina that my daughter will attend in August! I was shocked as I had never even heard of Warren Wilson College until she applied there. He was their first African student, so we bonded immediately. Strange coincidence! The Minister applauded the JMHS-K’s work and gave a check for $800 to the society, which is a lot of money in Kenya. There was excellent food, great speeches, a real commitment to change hemophilia, and lots of dancing. To one of my faithful readers, John, yes, we even danced disco!
The event raised $10,000 US. This is respectable even by US standards. By Kenya standards, out of this world. Congratulations to Maureen, Sitawa, Dolphine, Salome, Chege, Julie and Andrew, Sylvia, Stephen and Diane … and everyone who worked so hard to make this a success.
In Tanzania, we wrapped our trip up by giving presentations to medical students at the Muhimbili University Hospital, the main public hospital in Dar es Salaam. It was standing room only. Dr. Mukabi gave a great presentation on the medical aspects of hemophilia, and I realized how well educated the hematologists are here! What’s missing only is experience, and factor concentrates. The presentation netted two young physician students, who asked if they could volunteer for the society, which was exactly what we needed.
Drs. Stella, James and Mukabi: the new Hemophilia Society of Tanzania
We later met as a team to plot the way forward. We realized there are myriad issues to address and one can easily get overwhelmed, and then defeated. So we focused on public awareness, to try to increase referrals, to identify where the hemophilia patients are (only 16 out of an estimated 2,000 have been identified), and getting a coag machine so patients can be diagnosed in Dar es Salaam. Thanks to Richard, Dr. James, Dr. Magesa, Dr. Makubi, Dr. Stella and everyone we met for their assistance. I loved visiting Tanzania and cannot wait to return, and resume our work together.
So here in Ghana, we are just starting. Today the new Ghana Hemophilia Society will be inaugurated. The press will attend and I appeared with Martin Boakye, the president of GHS, on TV and radio. Yesterday, Martin invited me to speak at the Korle-Bu Hospital, to medical students. It was a rapt audience! I have a presentation on hemophilia, then on how my company helps developing countries with educational resources, consulting and free product. The message to them was this: as future orthopedics, pediatricians, emergency room docs, they will be the front line in identifying new cases. There are about 2,000+ cases in Ghana; only 25 have been identified! Martin’s young son is one of them.
We drove around the capital Accra, and I noted the beautiful downtown area, shimmering in the sweltering heat, and we also passed through the shanties and slum areas, which seemed to radiate waves of heat from the ground up. Martin filled me in on how many tribes exist in Ghana. Africans refer to tribes the way we often refer to our own heritage or ethnicity. I often call myself Irish, though I am American, because my ancestors are from Ireland. It’s the same in Africa: everyone is from a particular tribe.
The Atlantic Ocean pounded the beaches to our right, the same ocean that pounds the Massachusetts’s shores, as fisherman in home made dugouts prepared their rigs for a night our fishing. Women walk up and down the sidewalks at midday, balancing large loads of bread to sell to the long lines of traffic. Traffic jams exist in all African capitals, I suppose (except in Zimbabwe, where petrol is a rare commodity), and these ladies take advantage of it. Ghana in particular seems to have legions of women capable of balancing just about anything on their heads! Color abounds: in the brightly printed traditional dresses, on the painted walls of shanties and nice homes, right down to the nation’s flag.
GhanaGhana
Back to hemophilia: I had a tour of the blood labs at Korle-Bu. They have a coag machine but no reagents. It’s always something, isn’t it? Problem is, how to get reagents? Ghana has no factor except for that I brought with me, and only had their first infusion in the country in 2005, again with factor from Project SHARE. There are two dedicated physicians: Dr. Jennifer Welbeck and Dr. Ivy Ekem. What great ladies, to devote so much time on a seemingly hopeless task like building a hemophilia society from ground zero. Ghana has a lot of work to do to lay the groundwork for future care, but we will be with them very step of the way.
Africa, the “Dark Continent,” seems anything but dark. It is colorful, magical, inhabited by some of the world’s nicest citizens and some of the world’s worst dictators. Music pulsates here and seems to infect even the blood; food is fresh, flavorful and healthful, in sharp contrast to our processed and commercialized food in the US. There are white, glistening beaches, dense jungles, soaring mountains, wind-swept savannahs, torrential rains, stunning heat, adventure for all enthusiasts. If anything is dark, it is how we have left Africa behind in hemophilia care, when so much of the world enjoys prolific amounts of factor. There’s an Angolan proverb: In the larger affairs the minor are forgotten.
The new Ghana Hemophilia Society
I have seen African children disfigured, disabled; I’ve heard the mothers tell me stoically about the deaths of brothers, babies, children and fathers who have had hemophilia. Simple bleeds, so easily remedied. Sometimes there is not even ice to ease the pain.
There’s a proverb from Kenya: A child points out to you the direction and then you find your way. It took the death of little Jose, Maureen’s son, for her to start a society in Kenya that promises big change. It took the amputation and suffering of Richard’s brother Hepson to start a society to end suffering of all with hemophilia in Tanzania; it took the fear of suffering and loss for Martin to start a Ghana hemophilia society, to help his people.
But rather than dwell on the whys, I want to get to the hows. How are we going to help this amazing place, which is aching for our attention? If you are interested in helping us solve these problems, we need strategic thinkers, visionaries, and people with connections, cash and above all commitment. Join me over the next 20 years, and help save our brothers with hemophilia.
Finally, a Tanzanian proverb: Little by little, a little becomes a lot.
You never know what to expect when you fly into a country you’ve never been to before. Never been to Tanzania before, and I only had two and a half days to assess the hemophilia situation: I mean, what can happen in two and a half days? What kind of time can it afford?
Richard Minja
It’s enough time to make history.
I feel as though I have been here a lifetime, and have made lifelong friends. I am so, so proud of the Hemophilia Society of Tanzania and what they have accomplished so far. I admire every single one of them, for their determination, perseverance and compassion. We use these words lightly sometimes, but here, they are personified by Richard Minja, president of the society and whose brother Hepson has hemophilia; by Drs. James and Magesa; by hematology fellows Drs. Mukabi and Stella. It is a complete and humbling privilege to serve with them.
What is hemophilia like in Tanzania?
Imagine no factor concentrate — at all. And now imagine no cryo. Only FFP (for those of your from developed countries who forget what this is, it’s fresh frozen plasma, something used in the US a lifetime ago). And you must travel to the hospital with your child (with no crutches or wheelchairs available; just carry him on your back), which can take hours, as Dar es Salaam, the capital, has terrible traffic jams. You sit and sit in the heat, inching along. Public buses are overloaded, hot and sweaty. By the time you get to the hospital, the damage is mostly done. Many patients travel for days from other regions of the country. Remember, “This is Africa” (if you saw “Blood Diamond” you’ll get it) where not much is done quickly and where roads disappear, and mountains loom, and sudden rains drench you to the skin in a heartbeat.
Welcome to Tanzania!
But it is also a continent of breathtaking beauty, and of people warm and compassionate, for they know suffering, and are patient.
The hematologist here are great; I would trust my child with hemophilia to them at once. But they lack resources. The coagulation machines are broken so they cannot even properly diagnose their own patients. There are only 16 registered patients, when there may be about 3,000 countrywide. Of these, only 8 are confirmed in their factor deficiency. How do you practice medicine under such conditions?
What I loved about Tanzania most: the willingness of the new Society to do what it takes to help patients. I brought a donation of factor with me. Now, Project SHARE had donated factor before, but it actually sat unused in a remote Tanzanian hospital, because the medical staff were afraid to use it. It eventually went to Nairobi, Kenya, for a hospital there to use. When I gave the medical team at the Muhimbili National Hospital in Dar es Salaam about 20,0000 units, they wasted no time. 20-year-old Leonard Shimwella had been in the hospital about a week, getting FFP, which is slowly administrated, for a big knee bleed. Right away Dr. James prepared an injection. Somewhere between the prep and the injection we all realized history was being made: this was the first — repeat, the FIRST — Tanzanian with hemophilia ever to get an infusion of factor VIII within Tanzania. Incredible. Leonard was happy, but his joy couldn’t compare to ours. A barrier had been broken, a new door opened.
Shimwella gets Tanzania’s first ever infusion!
And as if that wasn’t enough we had a schedule to visit a family’s home. Faithful HemaBlog readers will know I never visit a country without spending time in the homes of the poor; how else are we to understand their needs?
So Monday evening we drove to the Keko slums, to visit Cecilia, and her 11-year-old son Cuthbert. I met Cecilia the day before, and she is a dignified, beautiful, refined woman. I imagined she lived in a nice flat, simple and sparse, but clean and well maintained.
Oh no. Her home is in a true slum, and here is what it looks like: dirt roads, with potholes brimming over with muddy rainwater; loud music blaring; people walking about; mosquitoes nipping our ankles (malaria is a #1 problem here); blocks of concrete, and rocks of all sizes obstructing the path; alleys and dirt squares; fear of being beheaded by the wire clotheslines strung everywhere, unseen in the dark; rivulets of muddy water streaming away. Total blackness… moonlight reflecting off the tin shanty roofs, and the stars overhead bursting with brilliance. I found myself staring in sadness and then awe. What does it take to live in such a place?
The slum turned out to greet us. And so did Cecilia and Cuthbert, and Cecilia’s sister Rose. You can’t imagine how three people live their lives in an 8′ by 8′ dwelling with no ventilation, shower, plumbing, or privacy. The lack of privacy alone might drive you mad. But there we were: Richard Minja, Dr. Zebediah Tilia, who is a friend of the family; and me. I took photos and then notes as I heard how Cecilia’s husband left her and his child; she is now a single mom with a child with hemophilia in a country with almost no care, earning about $3 a day (and that’s gross; there’s still rent and food and transport to be paid). And there was Cuthbert, with an active bleed. Dilemma time: what would you do?
CuthbertSwollen kneesLaurie giving infusion
Well, you infuse. And you go down in history a second time in a day for giving the first home infusion to a child in Tanzania. Does it get better than this?
I take no credit: Dr. Tilia did it all. How he found a vein in a dark-skinned child in the semi-dark is beyond me, and on the first stick! We were thrilled beyond words! Of course, Cuthbert was not so happy; it hurt!
Cuthbert really didn’t care a whole lot for me until I showed him my camera, and like all kids, he cracked the digital code pretty quickly and began snapping photos, smiling from ear to ear. We kidded and joked, and I asked Cecilia, how did she stay so lovely looking, when there was no place to prepare and nothing to prepare with? Dignity and beauty come from inside and one need only look at Cecilia to know this.
Stumbling back to the car, up cinder blocks, balancing on stones so as not to step in the treacherous puddles or twist an ankle, we happened upon a group of slum children who were delighted to see an American. They whooped it up, cheered and we all high-fived. I was passed an adorable one year old from a child of six, and cuddled him as the children war danced. It was glorious.
History made, and the start of something great in Tanzania, for we did more than infuse a child or two: we broke a century of tradition, of defeat, of mindset. As Dr. Tilia said at the meeting we had earlier: “This is a dream come true. This is a new future for Tanzania.” Changing mindsets is one of the most difficult things Hemophilia Leaders face, but it was done. Tanzania may not have much now, but they have one thing in their favor: a group of dedicated and young society members, not afraid to change the past and forge a new future, making history along the way. Congratulations to Richard Minja and his team!
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