April 2009

Making History in Tanzania

Laurie Kelley April 29, 2009

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?

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.

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?

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!

See all our photos here!

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!

Joy in the Morning

Laurie Kelley April 25, 2009

I flew into Tanzania today, a quick one-hour flight from Nairobi. I was greeted so warmly, so kindly by the members of the Tanzania Hemophilia Society, who made me feel instantly welcome and part of the family. Richard Minja, founder, and I have been communicating for four years, working to establish the society, and when we met he greeted me with an unabashed hug! We feel as though we have already met; so strong are the ties that bind people who live with bleeding disorders.

But first, let me finish telling my tale of Kenya. I wish I could bring you all with me to experience what I experienced: glimmers of hope in patients who were desperate for care, for a solution to some very difficult problem. Overall, Kenya has a great physician and hospital at Kenyatta Hospital, but the problems faced by Kenyans with hemophilia are institutional, cultural and logistical. Overcrowded emergency rooms mean that patients wait hours before being seen: those with serious bleeds risk life itself. Factor often is not available, and what little there might be must be used sparingly. The medical staff devote their entire lives to helping patients but even they cannot overcome a culture in which patients are meek, do not speak up when they are bleeding, and do not challenge the current system. The traffic in Nairobi pretty much dictates everything; your entire day is planned around how best to avoid traffic. You can literally sit for hours, inching along. Patients can never get to a hospital quickly this way. So many patients live very far from the hospital, and many do not own cars. How can they get from a rural house on a long, miles long red muddy road to a highway and then into Nairobi when they have no car and no reliable public transport?

So we know what we must do.

On Thursday, I flew back from Zanzibar, and pretty much just sorted myself out the rest of the day, trying to keep up with email. Maureen and her partner Sitawa picked me up at the airport and we met with Salome and Dolphin, two members of the board of directors, to finish plans for the big charity event they were holding Friday.

On Friday, April 24, we started our day early by visiting Mrs. Eva Muchemi, of the Diabetes Management and Information Center. She was wonderful! Diabetes and hemophilia actually have a lot of things in common, as both are chronic disorders. Eva gave us many tips in running a nonprofit and establishing family-based programs for education. One of the coolest things I learned (no pun intended) was how to create a “traditional cooler,” to store insulin or any biological product. Using two tin cans, charcoal (abundant in the developing world), and a rubber ball as a stopper, local artisans can make these insulated cooler cheaply. In that way, patients can store insulin at home!

Next stop, the hotel where the event would take place, to check on preparations. The rich smell of roses filled the air and I can see that Maureen and team pulled out all the stops for this event, which is in memory of Jose, Maureen’s firstborn, who died just shy of his sixth birthday on April 25, 2007. Rather than submerge herself in extended grief, she empowered herself to create this society to ensure that no other child should die of untreated bleeding.

Then, Salome, who is a nurse at Kenyatta and also a mother of a child with hemophilia, and I went to visit Charity, a vivacious mother of three who lives in Lumuru, on the outskirts of Nairobi. As we finally disentangled ourselves from vicious traffic, and patiently endured a police roadside checkpoint, we zoomed along the highway. Immediately the countryside unfolded, and a beautiful Kenya revealed itself. It’s a double-edged sword: along with the lush countryside comes increased poverty, though I have to say that rural poverty is quite different than urban poverty. What you forfeit in modern conveniences, you make up for with clean air, space, and peace. But life is hard there.

I snapped dozens of photos long the way, which will have to wait till I am back in the US, where we have high speed Internet. It takes too long to upload photos. But what photos! Wait till you see them all.

Turning onto a rusty and rock-encrusted dirt road, we bounced and banged our way to Charity’s house. We passed donkey-pulled carts, women balancing immense loads of vegetables or firewood on their heads, and random donkeys grazing on the thick grass. Finally we arrived.

Charity is a woman with a dazzling smile and lovely, British-clipped accent. She was so excited to have an American visiting her home-what an honor for her! But it was an honor for me. How often do we get this chance, to share intimately in the life of a struggling soul? Out of the house shyly emerged her children: Patrick, 14, Daniel, 11 (who has severe factor VIII deficiency) and giggling Ann, 5. Another cousin tagged along. Daniel actually looked in good shape, though a bit small for his age, while Patrick is slim and robust, strong. We had a tour of the home, the separate “kitchen,” which is a wooden shed, inside which was a steaming pot of soup. The smoke was really thick inside: directly above the pot was a cord of wood, which was being dried by the smoke. Nearby were vats of water–their household supply. Back out in the bright sun, we went to the rear of the house, where I was surprised to see two cows, which give fresh milk daily, and a cute calf. A small cat followed us about. The kids started to loosen up and we took photos.

See all the photos here.

Inside, we listened to Charity’s story: Daniel misses a lot of school though he is a good student. Education is absolutely paramount to them, for it ensures a future for the entire family. There’s no such thing as welfare for the elderly. You are cared for by your family or not at all. So you’d better believe these kids get educated. Daniel’s knees show signs of arthropathy, especially in the left knee. Unbelievably, though they have electricity, there is no TV, no washing machine and no refrigerator! Try to imagine no refrigerator, especially for a child with hemophilia. A small one costs $200 and we pledged to source finds for one. The kids smiled broadly when I whispered this might mean keeping the occasional Coca-Cola in the house for special occasions.

Patrick wanted to see photos of my family, and my pets, and when I handed him my iPhone, he wasn’t phased by the technology. He immediately got the hang of its touch, and skimmed through my photos, asking such intelligent questions.

David, the father, came by, limping. He had been mugged two years ago, and left with a shattered leg and has been unable to work. When I broached the subject of their income, I think tears came to his eyes. For a man not to be able to support his family seemed wrong. I looked about the humble abode, seeing how clean and neat the children were, the wonderful food Charity placed on the table for us to eat, and how attentive they were. Charity earns $35 US a month selling vegetables from their small farm out back.

We will enroll them in Save One Life, which will almost double their monthly income. Charity said they need money most for transport to the city for treatment. They almost always will need a taxi or to pay a driver.

As we spoke, I glanced up at the cupboard next to me, on which was an appropriate plaque at eye-level: “Weeping endures through the night, but joy comes in the morning.” Psalm 30:5. So appropriate for a child with savage joint bleeds, and a mother who holds him all night helplessly. To see their smiles today meant we have brought some measure of joy.

When it was time to leave, there were hugs and the kids were all smiles. In fact they piled into the back seat of the car for a lift to homes near the highway, so they could visit a friend. And we returned to the congested city for our big charity event, which I will need to write about in a day or two. Stay tuned!

From Church to Kibera

Laurie Kelley April 22, 2009

I am writing from Zanzibar, an island off the coast of Tanzania for two days of R&R. The very name Zanzibar conjures up spices, for it once produced 66% of the world’s cloves, and myriad other spices. It also served as the launch pad for the explorations into the interior by Livingstone, Richard Burton, and John Hanning Speke. Watch “Mountains of the Moon,” an excellent adventure movie, to get an idea of old Zanzibar.

Now, there is terrific poverty surrounding resort compounds. I am grateful to be here complements of Andrew and Julie, parents to a toddler with hemophilia. I’ll be seeing them tomorrow night for dinner and get to hear their story more. They live in Nairobi, Kenya, but own the Bluebay Beach Resort, a world-class resort on, what Andrew’s father Steven correctly said, is the most beautiful beach in the world.

A few days ago, Sunday, I attended Parklands Baptist Church for the 8:30 and 11:30 services, as I was invited to speak to the congregation about my visit. What an amazing experience! With only a half hour break between services, I enjoyed the singing, spirit and sermons. Six hours of church flew by. We prayed, sang songs in Swahili, and the music–I find most Africans love music and have its rhythms and words woven into their lives. My thanks to Pastors Simon and Ambrose for allowing me to speak about hemophilia and our mission to their congregation and to participate in their energetic and passionate services.

After church, around 3 pm, we quickly changed into hiking gear, grabbed a bag lunch to eat in the car, and then trudged into another adventure–the Kibera slum. With approximately one million people living in crowded, unsanitary conditions, the slum is the largest in Africa, and the most studied. There is a documentary about it–I haven’t seen it yet but intend to. It’s a place that completely fascinates me. When we turn the corner, off the main road, and head into the dirt road leading down to Kibera, I feel like we are being swallowed up into the pulsating entrails of a massive, living, writhing organism.

See photos of the trip here.

Immediately, my sense come alive as I take in the scenery, which deteriorates rapidly as we enter. The mud and stick homes and corrugated steel-roofed homes lining the road close in on us, and the crowd of people walking by thickens. The road gets bumpier and tighter. Immediately there are the smells: sometimes a ripe, thick stench of garbage, then the welcomed acrid waft of charcoal burning.

We greet David Lerner, the lovely young man who works for Compassion International, a Colorado-based nonprofit, who will be our guide into the slum. He climbs into the car and we exchange greetings. David, only 23, grew up in Kibera, and has such a worldly and mature perspective at such a young age. He is handsome, eloquently spoken and has had harsh life lessons. He is a survivor, someone with a perspective that no one I know has. He is remarkable; so young, so organized, a devout Christian. He helps run a school of 208 children, all sponsored by people in developed countries. I told him I want to come back and spend a day at the school. He gave Maureen good ideas about child sponsorships programs, and how they are run. Maureen will be running our program Save One Life, and it appears that David’s sponsorship program is run very much like ours.

After touring the school, we visited Anna, a mother with eight children. It’s hard not to be moved visibly by their poverty. Everything seems grey, including the children, covered with a layer of grime and dirt. She breast-feeds her baby while the other children play within a few feet. They giggle and grab my hand, hiding behind one another as they catch a peek at us. She sits in front of her house, selling vegetables, cigarettes in crushed, used packages, and charcoal in white buckets. Anna is a good mother, and sends her children to school. They don’t have hemophilia, and are not registered yet with David’s school. But he knows them and they give us a photo op. “Want to go inside?” asks David, gesturing to their tin shack, the door to which is barely covered by a torn curtain. I hold the hand of her little daughter who leads me in. The 10′ by 10′ windowless dwelling has one bed, a small charcoal pot–burning with coals–many bags of clothes filling the dirt floor, and the biggest surprise, her husband, lying on the bed. He’s lying on the bed, having a siesta while she is selling, breast-feeding and watching all the children. Where they all sleep is beyond comprehension.

We are sometimes harassed by the local guys, who are obviously drinking. I realize we are in the “business district” of Kibera. In 2001, when I came here, I was in only the residential area, and rarely saw grown men. So there’s a bit of tension. You must always be alert and wary. When we get into the car, Maureen fans herself in the front seat, as we must keep the windows up constantly and the sun is hot. We inch along in the car, with Sitawa driving, and move with peristaltic action, as men bang the hood sometimes. In Swahili they shout, “Hey! Why are you doing that? Open your window instead!” Sitawa and Maureen laugh. I never feel like we are in danger, but surely if you do something stupid–argue with them, get angry with them, get out of your car at the wrong time–you risk being hurt or harmed.

How to describe Kibera? An economy of poverty; children toddling everywhere, people lounging by their homemade shops, selling vegetables and charcoal. Goats strutting about freely, starved dogs, barefoot children with runny noses; and the occasional good chuckle: we pass by the “Beverly Hillz Salon,” in the midst of mud and garbage strewn lots. I realize that Kibera isn’t just a place where the poor live, it’s actually a thriving economy, based on bartering, marketing and hard work. It has schools, markets and its own radio station. It’s like no other place I’ve ever seen. I have to afford some respect to its inhabitants, who survive against all odds, and certainly in conditions we as Americans could not tolerate for a moment. As we depart, our car slamming against potholes and inching alongside people walking purposefully, dust swirls up from the unpaved roads, and we know we are simply inches away from misery, inconvenience, disease, alcoholism, crime and hardship.

When we are spat out of the slum and hit the highway, it seems already worlds away. We let David out, and he will bicycle back to the slum. We spent only two hours there and it was overwhelming to think that David has spent his life there and could possible spend the rest of his life there, a diamond in a mountain of coal.

We depart for the evening, each of us to our own worlds, wondering what it must be like to live in the world of the other.

Florence’s Story

Laurie Kelley April 18, 2009

One of the things I find remarkable here in Kenya are the questions patients ask me: Why does my knee hurt? Why do only boys get hemophilia? If I get a shot now, I will be well for six months, right? If my first child has hemophilia, then no other child I have will get it, is that correct?

Maureen Miruka, mother of a child with hemophilia, is determined to provide that education. She is at once shocked by the low level of understanding, and motivated to enlighten. One way to do this is by large family meetings. Another is by personal visits to the homes of families with bleeding disorders. Today we did both.

First, we shouldered past buses, cars and trucks on the congested Nairobi streets to visit Florence Odwar, a mother of five–two with von Willebrand Disease. Some parts of Nairobi are dangerous, and we cruised past slums, where I could not take a photo, because to lower your window might invite a quick snatch of your camera. Florence’s street is in a rambling but safe area. She welcomed our visit.

Her house is urban and small. A room that can only fit a couch and a chair, partitioned by a hung curtain, behind which I assumed was the bedroom, where she, her husband David, and children Moline, James, Nickson, Jovan and Georgina sleep. Seems impossible but they work it out.

David, Moline and Jovan have VWD. Rarely is there treatment. Jovan was diagnosed when his teeth were coming in and bled profusely. Afterwards, the entire family was examined. Florence was shocked. Even more than the physical suffering the three experience, there is financial. VWD infiltrates every aspect of their life.

See all the photos here.

Despite their obvious poverty, they are a hard working family. David is an electrician for a company; Florence is a seamstress, owning her own small shop for 10 years now. They earn about $200 a month. From that they pay rent ($62), school fees ($37), clinic visits ($13); they all take public transport and food costs are high. With each bleed, one parent must take time off from work, which forfeits their pay. Life is a struggle.

I was struck by Florence’s inquisitive nature, willingness to learn more about VWD, and determined to have a better life for her children. The children are ages 21, 20, 19, 9 and 5. All are doing well in school. James and Nickson want to be engineers; Jovan wants to be a pilot. If that fails, I think he wants to be Chuck Norris. I have never in my life been asked so many questions about Chuck Norris, whom Jovan things is real. We had a lengthy discussion about who would win in superhero fights (Mr. Fantastic could beat Chuck Norris, and Bruce Lee would beat Jet Li. Nobody could ever beat Superman)

The home visit was a great opportunity to evaluate Florence’s family for Save One Life and I am happy to say they are our first Kenyan family to enroll! It was also a great time to educate. We discussed many aspects of VWD and treatment, especially for Jovan’s terrible nose bleeds, and Florence asked for my book.

After a photo session which grew to include all the neighborhood children, we traveled on to a family gathering: about 13 families attended the first Family Day for the Jose Memorial Hemophilia Society-Kenya. I find most Kenyans to be soft spoken, polite and deferential. It was hard for them to break the ice, even with one another. The JMHS-K provided delicious food and promoted an atmosphere of community and trust. By the end, everyone was sharing their stories. Another Family Day was promised, with activities and education sessions.

Afterwards, the board members and I sat around, laughing and sharing our own stories about everything. There’s a real bond between parents whose children share the same chronic disorder. Maureen realized I had only been in Kenya for two days. “It seems like a week!” and I agreed. The bonds we made in two days will be unshakable and unbreakable eternally, or as long as hemophilia stalks the earth.

World Hemophilia Day in Kenya

Laurie Kelley April 17, 2009

Jambo!

The evening air in Nairobi is cool and crisp, and a chorus of frogs are singing as I walk back to my room, traversing a beautiful stone walkway through the lush hotel courtyard. One frog sounds like a frantic woodpecker on a hollow log, while others sound like little cell phone alarms. While I walk, I relfect on a remarkable day; World Hemophilia Day, in Kenya.

I arrived just 24 hours ago, and already feel like so much has happened. After 19 hours in transit, I arrived in Nairobi, Kanya’s capital, to be greeted by Maureen Nyangwara, mother of a child with hemophilia, her husband Sitawa, and two board members of the Jose Memorial Hemophilia Society, a new patient group. Maureen and I hugged like long separated sisters: we have kept in constant contact for almost two years, since her little Joseph died while in intensive care from nasal bleeding. This tragic loss was a catalyst for Maureen to take action, to try to ensure that no child die needlessly from bleeding in Kenya. She formed her nonprofit as a primary place for parents to feel heard, empowered and home. And today Kenya celebrated its first World Hemophilia Day!

The meeting took place at MP Shah Hospital, a private hospital that welcomes hemophilia patients. After touring the hospital, we arrived at the conference room, which began to fill with patients and staff. Soon there were about 60 people in attendance. Today would be the official launch of the JMHS. There were moving speeches by the MP Shah CEO and the Ministry of Health representative. Dr. Dave, the MP Shah’s hematologist and medical advisory board member, pledged to continue support to the patients and families. I spoke about the need for action by the parents: one or two families cannot carry the work that needs to be done by all. Though Maureen and I both founded our organizations after reaching a point of no return, I stressed that other families do not have to wait until they are in a crisis or pain to come to the Society and ask for hep or to offer help–come now! The Society needs their help and welcomes their ideas. I shared photos and stories from around the world, about how other countries with far less than Kenya successfully accomplished goals and improved care. Often, all it takes is one dedicated doctor and one dedicated parent or patient to move mountains.

Maureen then spoke about how Jose’s death changed her life, and how she will now work to bring better care to all. James , a spry 43 year old, spoke eloquently and passionately about what people with hemophilia can do–the emphasis of the day was Yes we can!

Later we visited the MP Shah hematology ward, where a beautiful new plaque proclaimed the inauguration. I was shocked and honored to find my name on the plague. I was then offered scissors to cut the ribbon to the new HTC center! And while we donate factor to Kenya from time to time, it’s the Kenyans who have done all the work, especially today. The day belonged to them, a celebration of loss, hope, and a compelling future when there will be factor for all. Not a bad start to this journey!