Ending 2012 With a Splash!

Another check on the bucket list!

Let’s end the year not about hemophilia… sort of. While in Zambia, just three weeks ago, I rafted the mighty Zambezi River, a dream I have always had. Here’s my recollection of the day!

Saturday, December 8, 2012
from the David Livingstone Lodge, with the sun setting outside my door, facing the river once explored by David Livingstone in 1855, tired,
spent and at peace. I spent the entire day rafting the Zambezi, and just
couldn’t be happier! I am sun-burnt, a toe nail is ripped, my right thumb
is not working, as I jammed it when I was ejected. But it was worth it. What
an adventure!
Zambezi Bridge connecting Zambia on one side to
Zimbabwe on the other. I visited both countries this trip
started out at 8:20 am, when I was picked up. The accommodations here are
fabulous–peaceful and the food is excellent. Choongo was to be our guide and
he brought me to the hut where everyone congregated. Joining me would be a young guy named Mark from England, and a couple named Lisa and Collin, also from England.
We got on the bus, and before we knew it were at the descent towards the
river. Down into the jungle, then balancing on some very slippery and sharp basalt rocks, into the gorge formed by the river and ending in magnificent Victoria Falls. We were to raft 27 kilometers this day! Over 25 rapids. And a few that “didn’t
count,” as Choongo said. Choongo is about my age, with a body hardened from ten
years guiding the rafts. With us was Gordon, a soft-spoken, 25-year-old  Zambian with deep eyes.
When we reached the water, the view
was spectacular! Above us towered the famous Zambezi bridge with the
bungee-jump cords neatly tucked up. We watched one raft crash into the rocks on
the left; crazy. One couple descended in separate, single-person kayaks; we learned later that
after only one or two rapids, the girl left, crying. She had had enough.
I did read this on line before I went: White Water Rafting on the Zambezi River in Victoria Falls has been classified by the British Canoe Union as Grade 5 – “extremely difficult, long and violent rapids, steep gradients, big drops and pressure areas.” This is a high volume, pool-drop river with little exposed rock either in the rapids or in the pools below the rapids. Oh yeah, bring it on!

Gulliver’s Travels….
Class V rapids action!
I’m ejected!

first rapid “Morning Glory: was an eye opener. This was going to be awesome.
Huge waves, roaring water, foaming and warm. We were blasted, soaked and wanted
more! By the fourth rapid, “Gulliver’s Travels,” the waves were crushing and
flipped the boat straight up and then to the right, where Lisa and I were seated. We
both were ejected quickly. It was quite frightening. The water was churning and sucking
me down. I felt as though someone had their hand on my head and wouldn’t let me
up. I came up once, but was pulled right into another rapid, underwater.
Somehow I grasped the whole time onto my paddle. I couldn’t breathe, and
couldn’t seem to get to the surface. It must have only been seconds, but enough
time to try to strategize about how to get loose, and also, is this the
end, really? I could see how people could drown in a circumstance like that. It felt like you were put into a washing machine without a way to get out. When I finally came up—and stayed up—I had a hard time breathing because I had
ingested so much water. It had gone up my nose, into my sinuses. My airway was contracted and burning, leaving me gasping. Steve, the team member in the kayak, an athletic, older and solemn man, came to me as fast as possible and I held on
tightly, bobbing in the churning waves. He brought me back to the raft. I gasped, “Steve, I’m going to name my first child after you Wait, my first grandchild! Even if it’s a girl!” He sort of smiled. Lisa was quite shaken
and didn’t seem to enjoy the rest of her half-day trip after that. I recovered fast and
thought, that was so awesome!

rapids followed. But in between briefly, I was able to take in the stunning scenery.
David Livingstone said of Victoria Falls, “Scenes so lovely like these must have
been gazed upon by angels in their flight.” It is a primordial, enchanting
place. Black as charcoal basalt rock is piled up like some giant infant’s
building blocks.  I am
mesmerized by the sight of them because I am so rock-crazy. Plucky trees grow straight out of the sheer
cliffs, their yellowish roots cascading down in tangles, like Rapunzel’s hair.
It is a scene of wonder, and every chance I get I find my eyes drifting at the
rocks and cliffs in awe. Gordon pointed up to the sky and overhead, it seemed there was a brilliant halo around the sun. “Those are called… those are called…what do you call that?” he asked. “Sun dogs,” I replied, squinting at the phenomenon, though I had never seen them before, only in pictures. Sun dogs, chasing their tails around the sun, cavorting while we plunge ahead. 
Young boys by the river
Half way through the day, we stopped for lunch, allowed Lisa and Collin to disembark, and picked up Victoria and Rodrigo, an adorable young Brazilian couple on their honeymoon. Gordon also left, and we acquired Leonard, a lanky youth with a flashing white grin, and a cheeky sense of humor! Young boys who had been bathing and playing on the rocks in a little natural basin stopped to come and ogle us. They lined up on the basalt ledges, their skin as charcoal-black as the rocks behind and beneath them. They seem to blend right in.
Lunch on the river
Off we went, back into the river. Mark
and I were just seared by the sun, like two fish in a frying pan. No amount of
sunscreen seemed to work, and we were doused so many times, it didn’t matter.
At Class IV rapid 13, “The Mother,” we hit a massive rebound wave and the entire raft
capsized. Again I was choking with water but this time it wasn’t so bad. I
grabbed immediately onto the raft, but the big metal frame in back threatened
to hit me. The current is incredibly strong and swift. First it pulls one way, then
another, then sucks you from underneath.
guides are amazing; within seconds Leonard hopped onto the upside-down raft, pulling Choongo on with him. I was already hanging on. But we were scattered
everywhere. Little by little we gathered, then both guides used a red rope attached to one side of the raft, leaned back, and flipped the raft over
and themselves back into the racing river. They scrambled in, nimble as river
otters, and helped each of us climb back in. We gasped and sputtered but loved
it all!
“Scenes so beautiful…”
Swimming in the warm Zambezi
Victoria and Leonard clowning
at rapid 17, the “Washing Machine,” I believe, we crashed again, capsized and
everyone went in again. The waves were massive and they kept coming. This time I
drifted a bit and while everyone else got in. I drifted into an eddy; these are
very tricky. As hard as you kick and swim, the current pulls you back into the
eddy, which flows opposite the river! I had to really kick to get back to the
raft, and was tired! Then later on, the rapids got more spread out, and were
only class 2, still fun. We all jumped into the warm Zambezi several times,
just to flow with the river. You can’t help but beam; it’s exhilarating!
it was finally over, we pulled to the shore, walked a short way and hopped a rickety cable car to the top of the steep gorge. We drove quite a while to get back to the hotel. We had
ice cold Cokes, and waved to the children in the rural villages we passed.
These villages were so meticulously made, it looked almost like a Disney production for
Epcot. The red soil was clean, the thatched roofs and mud walls, all
coordinated the same.
Red as “lobstas”! Mark and Laurie
just doesn’t get better than this. For me, the essence of life is personal development, direct and
adventurous experiences, and contributing back to the world as much as possible to improve the quality of life for those with hemophilia. I felt I hit all that on this amazing trip to Africa! And I can’t wait to continue in 2013.

“Human pieces of geometry”: Brian of Zimbabwe

With Dr. Timothy Stamps,
personal health advisor to the president

I’m actually in Zambia, Zimbabwe’s huge
neighbor to the north, having a hot tea on the deck of my lodge room on the
banks of the Zambezi. The sun is a scorcher today, the air humid as if someone
dropped a huge, wet blanket over the atmosphere. While I see Africa’s beauty
before me, I’m haunted by the image of an African boy in Zimbabwe. Though I
left Zimbabwe on Wednesday, my mind still drifts back, wondering what to do.

I visited Zimbabwe from December 1-5,
and Zambia from the 5th-10th, tomorrow. I’ll write about
Zambia next Sunday and finish Zim here.
ZHA members with Mr. David Mvere, dirctor
of National Blood Transfusion Services

The Health Minister was unavailable to
meet, but we did get to meet with the personal health advisor to the president,
the charming Dr. Timothy Stamps, who I have met twice before. We chatted about
hemophilia, and it’s good to have someone like him in government who knows
about it. But even more important, we have the National Blood Transfusion Service,
which is really the backbone of hemophilia care in Zimbabwe. David Mvere, the
director, is an advocate for those with hemophilia—and always ready to help us
when we have product to donate. I’ve met him several times over the past 12
years. We will work together to see if we cannot move hemophilia care forward
in 2013. What’s needed is a national “tender,” in which the government
advertises that is has so many dollars to spend on hemophilia products. The
drug companies then bid for the sale, keeping their proposed price tags secret
from one another so the government can take advantage of the lowest
price/highest quality drug. Zim hasn’t had a tender in almost 20 years, I

ZHA, Laurie and Dr. Dyana (center) at Parirenyatwa Hospital

The rest of my time in Zim is spent
advising the Zimbabwe Haemophilia Association on best practices and providing
an assessment of what they need to function more effectively and produce
And then, there are the hospital, home
and family visits. Last week I told you about Brian, an orphan who lives in a
mud walled, maize-thatched circular room outside of Harare. We also stopped by
the Parirenyatwa Hospital, the main public hospital in Harare, where some
patients go for treatment. Little Brian had been admitted. Simbarashe Maziveyi,
the ZHA president, chatted with him in Shona, the native language to learn more
about his case.  Simba would have
made a great professional counselor; his calm demeanor, listening skills and
reassurance touch everyone.
Simba, ZHA president, counseling Brian

We meet with Dr. Dyana, the Cuban
hematologist who chose to stay in Zimbabwe to help cancer and hemophilia
patients. Thankfully she did because Zim suffered for many long years without a
single hematologist in a country of approximately 500 patients.

Then we drove out into the bustling
Harare traffic (that’s a good thing
here! Shows progress) We visited Vincent, a 33-year-old with hemophilia, who
also happens to be a Save One Life beneficiary. He lives with his wife and
small daughter in a 12×12 room—just a room—with all his worldly possessions:
a small TV, some clothes, a few books. He has not worked since January, and you
can see the anguish in his face. How do they eat? Where do they get money from?
Save One Life gives him some cash. His sister lives nearby and helps out. But
they are desperately poor. Vincent does own a bicycle, which he proudly shows
me. He can bike to the treatment center when he has a bleed.
This must sound absurd to the average
American with hemophilia! But it is a survival tactic in Zimbabwe. And when
Vincent gets to the treatment center at the Parirenyatwa Hospital, there
usually is no factor, of course.
We drive to see Nhamo, a 41-year-old
man who has come from very far away by bus. He’s had an ulceration and bleed on
his left hip for months. The tissue has died and needed to be cut away. The
wound can’t seem to heal and there’s no more factor. He’s now staying with his
sister in a small room on someone else’s property. His crutch is homemade–a
stick. He can’t work, can’t heal… this story is repeated many times in Africa. Luckily,
we do have factor for him. Then he shows us his hospital bill: $2,500+ dollars.
Simba interviewing Nhamo

Talk about out of pocket costs: how is
a destitute guy from a rural area ever going to pay this off? Might the hospital
refuse him treatment if he doesn’t pay? Maybe. Simba pledges to go talk to
officials on his behalf. This is really the value of going to visit patients.
The founders of the Flying Doctors of Africa (now AMFAR) once said that if you
want for patients in Africa to come to you, they’ll die; you need to go visit
them. I take that to heart.

Last stop of the day is Tanaka, from a
family I have known for 11 years! Tanaka is adorable, charming, bright. And a
hugger. Hugs are not a real tradition here, but Tanaka sure loves it. The whole
family and I embrace one another at our reunion. They present me with a
beautiful blanket with an elephant on it. Tammy from Texas sponsor Tanaka, and
the money really helps him. Tanaka flashes me his trademark megawatt smile when
it’s time to leave.
Tanaka gives his sponsor a gift!

On Tuesday we have a patient meeting,
with as many families as possible in attendance. Some have come from hours away
by bus. Many are in pain, seeking relief. Some of the moms are single, and
confide their fear about how to get financial relief, and how to treat bleeds.
Someone asks about a cure; another about gum bleeds.

One enormous obstacle in any developing
country is infrastructure, particularly transportation. Even if factor were
available, many cannot get to it as they can’t come to Harare each time their
child has a bleed. I’m convinced the only solution long term is home therapy,
which doesn’t exist in most developing countries. As many of the moms nod their
heads, we ask for a volunteer among them to organize a home-infusion training
day. It’s a go, and the moms pledge to get together; the wife of one man with
hemophilia is a nurse and she offers to be trainer. It’s a positive thing to at
least start with.
Vincent and family: out of work but
not out of hope

On Wednesday, as I prepare to leave for
the airport, Simba begs just one more visit. Often it’s when I am feeling tired,
burned out just want to get on with the next leg of the journey or even go
home, that the most important child is met. This happened Wednesday.

We drive back to the Parenireyatwa
Hospital, to the front of the shed where the ZHA offices are. There sits a
little boy that immediately brought to mind the words of Frank Schnabel,
founder of the World Federation of Hemophilia: that patients with hemophilia
were “human pieces of geometry” stuck in a wheelchair. Only this little
triangle boy didn’t even have a wheelchair.
Brian is 13, but only weighs 25 kilos,
about 50 pounds. Malnourished, in horrible chronic pain, he sat in the
brilliant sunlight with swollen feet, four grotesquely swollen fingers,
withered biceps—I could touch my forefinger and thumb around them easily—huge
elbow joints (or was that an optical illusion due to the wasted musculature?).
His face registered such pain; and he was wearing a Jim Morrison t-shirt, as if
he knew I was a huge Doors fan and was desperate to get my attention.
Brian steals our heart: he’s an orphan,  can’t walk,
or lift his arms and is in constant pain

My heart broke for this child, an
orphan, being raised by his grandmother in a rural village, where he will no
doubt be blamed for this disorder because of witchcraft. When I asked Brian to
lift his arm, to see if he could at all extend it, he had to lift it at the
shoulder, but lacked the muscles to lift his arm, and was prevented from
searing pain.

I have never seen a child tortured
before, but this was as close as I could imagine to seeing it. Simba, voice
calm and soothing, elicited the necessary information, and we arranged for
Brian to be admitted at once, and provided the factor. In the States, Brian
would face months and months of treatment, nutrition and rehab. A Facebook
posting that night led to three families wanting to adopt him, and more who
want to sponsor him.  We even asked
Simba that night, but no. “His family could not possibly part with him,” he
Laurie, Simba speaking with Brian’s sister, “Beauty”

It’s comforting to know that Brian is
loved, but it eats at us that our children in developed countries enjoy every
benefit of medicine and can lead normal lives. Brian is stuck in a time-warp:
care will come to Zimbabwe, of that I am sure, but not perhaps in time for this
one precious child.

A great goodbye from the Youth Committee of the ZHA

Zimbabwe Rising

It’s always startling when you visit a developing country that is actually, well, developing. That’s Zimbabwe. When I visited five years ago, the country was teetering on the edge of economic collapse. Harare, the capital, seemed desolate. I half expected to see tumbleweeds blowing about, like some abandoned mining town in the Wild West. There was little fuel, little food, miles-long queues at the lone gas station that actually had gas, and long lines of people waiting at the bank doors, begging to withdraw their life savings before the currency collapsed. To pay for anything literally required bags of Zimbabwe dollars, which were fairly worthless. Each restaurant, if it had food, required a money-counting machine to “quickly” add up the plummeting currency.
When I arrived in Harare on Saturday, I was stunned at the transformation. I was greeted by my colleagues from the Zimbabwe Hemophilia Association, three men who have hemophilia. Downtown was bustling with cars, nice cars. I had never, in the three previous visits to Zimbabwe over twelve years, seen so many people out and about. Doors were open for business and shops and restaurants were selling. Most surprising was seeing the predominant US dollar being spit out of cash registers and hands like slot machines. Zimbabwe had embraced the US dollar as a major currency, and suddenly, things got better.
But not everything: life for those with hemophilia is still harsh and unforgiving. I was about to be reminded just how much.
Reality Shows
The ZHA Committee Welcome

Today, Sunday December 2, we had a meeting of the Zimbabwe Haemophilia Association (ZHA) at my hotel, the Rainbow Towers in downtown Harare. The committee members quietly presented a still grim picture of life with hemophilia: Zimbabwe is totally dependent on factor donations, and in the past year ten patients died from lack of clotting factor. Unemployment still hovers are 80% and most of the men with hemophilia cannot get jobs. With a show of hands, five of the eight at the meeting were not presently employed. There is only one hematologist in the entire country, in Harare. One. And she’s Cuban. Seriously, God bless the Cubans for sending their doctors out in the world as part of their public health policy.

No one from Harare has been to Bulawayo, the second largest city, since 2007, when I last visited there and brought two committee members with me. Reason? Lack of funding. In fact, lack of funding impacts everything. So the ZHA has plans and dreams but can scarcely carry them out. The lack of funding is demoralizing and hangs over everyone like the sword of Damocles. But the ZHA is tenacious; the members just won’t quit. As one confided, they may wish to walk away, but they would leave behind the deaths of dozens of people on their souls, for without the ZHA, no one would care about the children with hemophilia in Zimbabwe. And these children are slowly being tortured, by an ancient disease that is relentless, senseless and crippling.
Solitary Confinement: George’s Story
Each visit to a developing country is not complete until I witness: this means I go out into the “field,” whether it is literally a field, farm, megaslum, or inner city barrio; anywhere there are patients living, struggling to survive. I need to immerse myself in their world, if only for a day or even a few hours, to know how they live. How can we help if we don’t understand how they live?
Simbarashe Maziveyi accompanied me. Simba is a young man with hemophilia who is articulate, thoughtful, and as soft spoken as he is determined to change hemophilia’s destiny in Zimbabwe. He is president of the ZHA and has severe factor VIII deficiency. I met him first in 2000, during my first trip to Zimbabwe, when he was only 19, a fresh-faced college student. We’ve been in touch ever since as he was groomed to one day assumes leadership. Simba recommended that we go to see George.
Roadside Vendors
Colorful and Curious

Just 20 minutes outside the electrifying energy in Harare, a subtler tragedy emerges. We drive past roadside shops and trading centers, colorful and crude. Here, vendors hawk the items they purchased in South Africa to sell to pedestrians; and so many in Zimbabwe seem to walk everywhere. On the outskirts of the capital, the highway eventually stretches before us as we pass “Goat’s Place,” a sad, miles long cemetery, simple and rural, dotted with grey headstones, so nicknamed because next to it is the market where goats are sold. Roads taper down to dirt roads on our quest to find George, a 20-year-old with hemophilia. The sky, so unnoticed in the sensory overload of Harare, becomes startling large and piercing blue with puffy clouds, like an anesthetic beckoning to look up and not down at the suffering.

Rural Africa
Zimbabwe means House of Stones

We stop briefly and in hops a smartly-dressed lady and her daughter: this is Judith, George’s sister, who will show us the way. George doesn’t have an actual address. As we turn down another dirt road, Simba points out the distant city ahead, Chitungwaiza. As I struggle with the Shona language pronunciations, he tells me “Chi Town” will do nicely. It reminds me of the scene from “The Mummy” when the adventurers first spy the far off city of Hamunaptra, where their fate awaits. Like military ramparts, large hills of dazzling rocks both distract from and guard the city. I have a sudden urge to put on my rock climbing gear.

Drought stricken Maize

A sharp left and we rattle down an uneven dusty road, our driver Andrew taking care not to damage his car. We park and hop out. It’s hot. The dirt crunches beneath our feet and I realize we’re stepping on dehydrated maize. Despite being the rainy season, the ground is thick and hard, cracked and muted. The maize is either ankle high when it should be thigh-high, or it’s nothing, dead before it could even sprout. I feel like I am on the edge of the Sahara; how did the topography change so drastically so quickly?

We walk a bit to two thatched, circular dwellings; this is where George lives. He hobbles out of the mud home, on one crutch, left leg permanently bent at an almost 45 degree angle. Simba tells me the one crutch was an improvement; when they first met, George was using a hoe as a crutch.
Laurie interviews George

George is smiling, displaying a gorgeous, perfect set of teeth, like most Zimbabweans. But he gets shy, and almost embarrassed. Perhaps because of our age differences, or that I am an American come to visit him. Simba’s comfortable style puts him at ease. We interview George to learn more.

George in front of his house

He lives in these two tiny, mud dwellings with his 17-year-old brother Simba. One is for cooking only. The other, which cannot be more than eight feet in diameter, is for sleeping. His parents are dead. He has four other brothers and two sisters. His sister Judith, the one who came with us, oversees his care. But she lives four kilometers from him. How does he get by? He farms a little, seemingly impossible given the state of his leg. He simply cannot walk without a crutch and barely can walk with one. A nearby well supplies water; there is no electricity. (Try to imagine life with hemophilia, without any electricity. Just try)

George contemplates his future

George is solemn as he shares. This is a young man who has suffered. Loss, pain, deprivation and uncertainty about a future.

George’s leg cannot straighten

What does he do when he has a bleed? He must hobble to his sister’s place, four kilometers away. As if that wasn’t bad enough, he must cross a footbridge. The bridge is in ghastly disrepair. Originally the land was owned by a white farmer, as much of the land in “Rhodesia” used to be. Independence came for black Zimbabwe in 1980, when Mugabe came to power. In 2001, during the very week I was there, Mugabe decided that there would be land “reform.” Black citizens could now reclaim their lands from white farmers, even those who had legally held family farms for 100 years and had provided the agricultural revenue that earned Zimbabwe “the breadbasket of Africa.” The guy who owned this land I stood on was one of them, and he was not happy. Before he abandoned his land to the black citizens who came to claim it, he left a little present behind. He bombed the stone footbridge. George now has to navigate this treacherous passing each time he has a bleed.

George and the bombed out bridge

He then spends the night at his sister’s, and in the morning goes to Harare, to wait at the hospital for help. By then a lot of damage has been done to the bleeding joint.
George and mentor Simba

The family hopes to get George started in some business, maybe selling chickens. Poultry sells well in Zim, and it wouldn’t require the manual labor that farming does.

Before we leave, the rest of George’s brothers show up. One has perhaps had a bit too much of “Zed,” the potent, illegal brew that is bootlegged from Mozambique to the disenfranchised in Zim. It’s a killer, literally, and is nicknamed “Zimbabwe Early Death.” Later, when Simba and I stop at a grocery store to pick up staples as a gift for the next family we visit, two men loaded on Zed start harassing the women in the cashier line. In their hands is a bottle of whiskey—as if. I have to push them back, out of my private space as they are breathing down my back literally and making comments. Usually Zimbabweans are the most civil and polite of people I have ever met, but Zed makes these two guys dangerously uninhibited.
Time to go and visit another family, and George’s visit puts a sad touch to the day. But a decision is made: we need to get him enrolled into Save One Life, our nonprofit that sponsors children with hemophilia in developing countries. If ever there was a candidate for Save One Life, it’s George.
George awaits a Sponsor

Yet there’s a touching ending to the day: I hand George $100, a fortune, and a gift from Cindy of Hawaii. Cindy volunteered her honorarium in one of our market research studies, to give “to someone in need.” It’s nice to know a young mom of a child with hemophilia in Hawaii can impact a young man who is almost in solitary confinement half way around the world, in a rural village in Zimbabwe.

As we pull away in the car, Andrew, the driver begins peppering Simba with intelligent questions about hemophilia, from the symptoms to the genetics. And finally, “How did you make it so far, without much medicine?”
Simba smiles, as he is not one to complain. “Faith,” he says. “Mostly faith.” A family of chickens cross the road in front of us. The hen has eight little chicks in tow, but the last one, for whom we have to stop, is lame in one leg, and cannot walk well. As it struggles over the drought-stricken ruts in the field, I say, “Like George.” We smile sadly and drive on.
 Return in a few days to read about Monday: A meeting with the Health Minister of Zimbawbe, and a visit to see Vincent.

“Safari” through Zimbabwe

My trip to Zimbabwe has come to a close. I am preparing to leave today, with mixed feelings. There is so much hardship here, but so much potential!

Friday was spent mostly in transit. Peter and I traveled together with his family: Laureen, his lovely wife, who shares the exact same name as me; Prince, his 11-year-old son; and Nkosi, his active and mischevious 3-year-old son. The trip was over 4 hours north to Victoria Falls. We traveled mostly in the evening, which is risky as there are animals in this very rural and wild land. We arrived safely and settled in.

Saturday we had quite the day! We began with a helicopter ride over Victoria Falls, the longest waterfall in the world, which creates a natural border between Zambia and Zimbabwe. Laureen and the boys had never flown before, and this was amazing! The boys were just fascinated and so excited!

Then we had a hike through Victoria Falls itself to see this stunning natural wonder of the world. Shadowing us were a troup of monkeys who were quite bold. We also saw deer along the path. The views were many and just indescribable. Vic Falls was discovered in the mid-1800s by British explorer David Livingston.The tremendous water power from the Falls kicks up spray and creates a rain forest all along the length of the Falls.It was hot that day so the “rain” felt great.

Finally we had a night safari through the Vic Falls game reserve. Safari means “journey”in Swahili, and was introduced into the English language by Richard Burton, the famed Irish explorer who charted interior Africa in the mid-1880s. On this journey, we saw elephant, rhino, hippo, impala, zebra, wart hog, water buffalo and tons of bugs. Our guide Mike was fantastic and taught us a lot about each animal, more than you would ever learn on a TV show, and the delicate eco-system that keeps all things alive in their symbiotic relationship. We didn’t feel so symbiotic, however, particularly when we stumbled upon a 100+ herd of water buffalo, who stared at us menacingly. Water buffalo are considered the most dangerous animal in Africa. And they stood only a few feet away!

As wonderful as the day was, Peter and I couldn’t help but continue to brainstorm ways to help the Zimbabwe Haemophilia Association get organized, raise awareness of hemophilia in the country, secure funds and most immediately, help the children in dire need. Top of our list? Elton, the 17-year-old with the hideously swollen knee. He needs to go to South Africa at once for testing to try to save his leg. We have a massive to-do list when we each return home.

I must end my trip now. But let me thank Peter Dhalamini for his superb assistance all throughout my trip. Peter organized every aspect of it and is well respected and beloved by the hemophilia community here. He has hemophilia, has laboratory training, and is a born politician! He knows everyone and can enlist just about anyone’s help. I cannot thank him enough for making this trip so safe, effective and enjoyable. Thanks also to his family for sharing the last leg of our trip together.

Thanks also to so many others: Lenox, Dr. Mvere, the ZHA, Collin Zhuwao, Simba… and everyone who assisted. Zimbabwe is a tough place to live. Food, cash, fuel, foreign exchange, medicine and basic necessities are all hard to come by. But its people persevere with grace and dignity. Gentle and patient as they are, Zimbabweans don’t have the luxury of waiting out the ravages of hemophilia, and that is something we are about to change. Help is coming.

(Photos: Victoria Falls; Impala; One of Big Five; How the other half lives)

Building Bridges

Zimbabwe is just as beautiful as it was in 2001 when I visited for the second time. Lush, green, and filled with some of the friendliest and most polite people on earth. I arrived in Harare, the capital, late Sunday night after 32 hours in transit. I received a warm welcome from Peter Dhlamini, my colleague and a person with hemophilia. We spent all day Monday visiting the Zimbabwe Haemophilia Association (hemophilia is spelled a la British, as Zimbabwe is formerly a British colony), meeting with many patients and also having a lovely visit with Dr. Timothy Stamps, personal medical advisor to Robert Mugabe, the president, and a member of the Health Ministry.

So what is hemophilia like in Zimbabwe? Try to imagine this: earning about $20 US a month, if you are able to work at all (unemployment rages at 80%); not being able to find gas when you need it; losing electricity several times a day; facing a drought (there go the vegetables you were growing to feed your family); not being able to go to McDonalds’, Wendy’s or Dunkin Donuts (they don’t exist here); indeed, not being able to eat out much at all because there is little food. Not being able to see a hematologist because there is none. Not being able to infuse with factor, because that is also near to impossible to get. I was told today that patients with hemophilia treat almost solely with the factor donations given by me, and that is not much. I tried to put myself in the shoes of Zimbabwean mothers, and I felt momentarily like I was on another planet, cut off, isolated, helpless. The children suffer immensely, and are used to suffering.

Meeting the families was simultaneously humbling and wonderful. We sat around a U-shaped table at the National Blood Service. Every child and young adult has joint contractures. One young man, Dickson, had the most severe case of synovitis in his knee I have ever seen anywhere. He is in immediate need of surgery. Another mother had already lost three sons to hemophilia: she lost twins at age 6 months, another one at age 2. She is left with one son, a lively 10-year-old. He husband left her, for bearing all these “defective” children. So many questions were asked: what to do about dental bleeding? How do we get tested if we suspect our son has hemophilia? Can you detect hemophilia in utero? What do you do when veins don’t cooperate? Can you get us butterfly needles? Syringes? Ace wraps? Such simple questions, such great needs.

The meeting with Dr. Stamps gave us ideas on how to get more publicity for hemophilia. Stamps shared candidly that hemophilia is often confused with “pedophilia,” and thus many people shun anything to do with hemophilia. The way to counteract that is to promote hemophilia to the public. Stamps also noted how the Ministry of Health is focused on three big medical challenges: malaria, tuberculosis and AIDS. Hemophilia is in the “bottom of the inbox.” But this is not to say things are hopeless; through dedicated action and public awareness, things can turn around. This will depend primarily on the ZHA, which is composed of mostly patients.

Sobering, but I love a challenge. I think there is great hope for Zimbabwe, if the rest of the world supports it until it gains momentum and experience. And all that is possible. But wow, Zimbabwe faces harsh economic times. I had a taste of this when we left tonight to try to retrieve some wayward luggage at the airport. We called the airport all day but the lines were busy, or not working. By 7 pm we finally decided to go by car, driven by Alex, father of a boy with factor IX deficiency. En route, we noticed his gas level was quite low, almost out. So we zoomed down dusty roads through neighborhoods cast into complete darkness by power outages, pausing to ask for specific people who know someone who might know someone who could get us just a liter of gas. Mission accomplished: we got a few liters, found my luggage, and returned to the hotel. I was amazed when the lights switched on and the internet worked. You learn to settle for little victories in the developing world, and appreciate luxuries tenfold.

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