Well, if nothing else, I made good progress on my pile of crosswords.
Wednesday, September 21, 2011
Protesting on the inside, maybe.
Not a peep all day. Once, we heard a siren. That's about it. We've had a few visitors to the house (Dr. Sethi's flying out tomorrow, so folks are coming by to wish her bon voyage), and all of them say the same thing: the stores are closed and the streets are quiet. Lots of apprehension for nothing, it seems.
Tuesday, September 20, 2011
Protests?
The morning dawns! Nothing so far except the usual street sounds outside and bright sunshine filtering through our windows. I admit to wearing my navy blue sweatshirt right now, which I think makes me a patsy of the established party, but I'll change it out for a nice neutral green later.
Just had a quick flashback to the very first protest/rally/march I remember attending: we were all under the age of 10 and Mom took us to downtown Annapolis to support more restrictive gun laws. We loved the chanting. Imagine tiny voices: "What do we want?" "GUN CONTROL!" "When do we want it?" "NOW!" Still do, I guess.
Just had a quick flashback to the very first protest/rally/march I remember attending: we were all under the age of 10 and Mom took us to downtown Annapolis to support more restrictive gun laws. We loved the chanting. Imagine tiny voices: "What do we want?" "GUN CONTROL!" "When do we want it?" "NOW!" Still do, I guess.
Limits
Between the speeches, the dancing, the ululating, and the sunblock distribution, I completely forgot to mention the “testimonial” portion of Albinism Awareness Day. There was only one offered, but it was a doozy: a young man named Coco who’d made it all the way through graduate school in the Congo (DRC), only to be hunted down one night by armed, anti-albino vigilantes in his own neighborhood. He fled out of his parents’ back window and basically didn’t stop running for the next several years. He went out of the DRC, through Burundi, into Tanzania, futilely seeking protection from the police against those seeking to make some money off an albino corpse. Finally, a sympathetic Tanzanian cop directed him to the Dzaleka Refugee Camp in Malawi, just 45 minutes outside of Lilongwe.
And that is how, as guests of Coco, we got invited out to visit Dzaleka this morning. Boniface, who came with us, told us that “Dzaleka” means something equivalent to “limit”, or “barrier”; prior to its incarnation as a camp, the area was actually a political prison, reserved for those so-called troublemakers whose political activism the state judged to be beyond the limit. Now, of course, the name has a different implication, but still sort of fits: The refugees inside are both far beyond their native barriers while simultaneously limited in terms of movement within Malawi.
I’ve never been to a refugee camp of any kind before. As we rode out, I was steeling myself for a terribly depressing tent city, full of squalor and sickness and people who’d born the full cost of Africa’s many disastrous governments.
That last one, of course, is true. The camp has about 15,000 inhabitants now, with about 400 new refugees arriving each year. They come from the DRC, Somalia, Rwanda, Zimbabwe, Burundi, and occasionally places as far Sudan. Our little bits of Chichewa were rather useless in a sea of non-Malawians; the lingua franca is a mix of English, Swahili, and French, with an occasional smattering of Amharic thrown in.
But my other fears turned out to be pretty damn far from the truth. The Dzaleka Refugee Camp is rather amazing. The UN and the Jesuit Refugee Services do a remarkable job of accruing resources, making the most of them, and then putting smart, dedicated people in charge. Simple tactics, but easier said than done.
And they do this at many levels; people come to the camp with a wide variety of backgrounds, physical capabilities, and education, and the Dzaleka coordinators seem to do an admirable job of catering to as many groups as they can. We saw, for example, a beautiful computer lab designed for those refugees seeking higher education credits, with at least 20 shiny PCs and a central projector that would’ve been at home in any US college campus building. And the computers actually worked! They hadn’t broken and then been abandoned for lack of technical know-how! There was an IT guy on hand to fix any issues and about a dozen young men and women working at the consoles, waiting for their Skyped-in lecture to start. And the whole building is powered with solar panels on the roof. Amazing.
And then, for those refugees less likely to pursue college coursework, the wider camp is a remarkable testament to some UN flunky’s love of organization. All the typical community institutions – churches, medical clinics, even rec halls – are located prominently in the camp and have the staff and at least the minimum amount of supplies necessary to do their jobs well. (Dr. Sethi’s already trying to figure out how to bring a derm clinic to the camp next year.)
And the community itself is much, much more than a thrown-together tent city. Upon arrival, every refugee is issued a designated plot, within walking distance of a standardized water pump and with a built-in connection to electricity. They’re free to build whatever kind of home suits the needs of their family, and are likewise free to grow whatever kind of crop they want on their allocated piece of farm land. The streets are wide enough to stay clear and the buildings, made of some sort of mud-concrete mixture, feel permanent. Chickens and lambs and goats putter around through back yards. The people look busy – no one is simply waiting for handouts. In truth, Dzaleka seemed like a much more pleasant place to live than many of the rural Malawian villages we’ve seen so far this month. It’s also the only place I’ve ever seen in East Africa where the homes actually have addresses – every door is marked with a letter and number combination which helps the camp coordinators find particular refugees in case of emergencies.
It also struck me, as I was walking around, how a camp like Dzaleka is a bit of an economist researcher’s dream. It’s a large, essentially captive population, with a steady stream of known inputs (rations of oil, rice, beans, etc.). What happens to this community? Classic Econ 101 stuff, it turns out. You get an amazing second-hand market – we walked by folks selling everything from Disney blankets to traditional Ghanian fabrics to shovel heads. A few businesses can exist targeting only a specific subpopulation in the camp – we saw an Ethiopian restaurant, for example – but most business survive by catering to the needs of all refugees, willing to sell to anyone with something worth trading for. You also get the development of an entertainment business: we poked out heads into a Dzaleka “movie theater”, a dark home with benches where patrons can pay 20 kwacha (about 8 cents) for the privilege of watching 4 hours of whatever DVD happens to be playing in the ancient TV at that time.
You also get the formation of new alliances. Our tour guide, a young man named Thierry from the DRC, actually met his wife in the refugee camp. He fled the Congo at age 25 for reasons he preferred not to say (though he does bear scars from bullet wounds on his right leg), traveling with his mother across the border in the back of a pick-up truck. A few months after arriving, he met a lovely woman also from the DRC – and the rest is history. They’re both learning English now, wondering whether the powers that be might see fit to relocate them to Australia, or the US, or Norway – countries that tend to accept the most camp refugees, apparently.
Because no matter what their training or education, or how useful they’d be in the “Warm Heart of Africa”, Dzaleka refugees are in no way eligible to become Malawi citizens. Likewise for babies born to refugee parents. They are resigned to wait – wait in the camp, wait to be returned home, wait to be sent on to a brand new life. Our guide Thierry told me he simply doesn’t think about it. As far as he can tell, he has no say in the matter. So in the meantime he’s simply living his life at camp, with his young wife, relaxing in the evenings by watching DRC music videos on the TV in their 2.5 room home. Not the terrible life I worried I would see, but a strange one nonetheless.
And that is how, as guests of Coco, we got invited out to visit Dzaleka this morning. Boniface, who came with us, told us that “Dzaleka” means something equivalent to “limit”, or “barrier”; prior to its incarnation as a camp, the area was actually a political prison, reserved for those so-called troublemakers whose political activism the state judged to be beyond the limit. Now, of course, the name has a different implication, but still sort of fits: The refugees inside are both far beyond their native barriers while simultaneously limited in terms of movement within Malawi.
I’ve never been to a refugee camp of any kind before. As we rode out, I was steeling myself for a terribly depressing tent city, full of squalor and sickness and people who’d born the full cost of Africa’s many disastrous governments.
That last one, of course, is true. The camp has about 15,000 inhabitants now, with about 400 new refugees arriving each year. They come from the DRC, Somalia, Rwanda, Zimbabwe, Burundi, and occasionally places as far Sudan. Our little bits of Chichewa were rather useless in a sea of non-Malawians; the lingua franca is a mix of English, Swahili, and French, with an occasional smattering of Amharic thrown in.
But my other fears turned out to be pretty damn far from the truth. The Dzaleka Refugee Camp is rather amazing. The UN and the Jesuit Refugee Services do a remarkable job of accruing resources, making the most of them, and then putting smart, dedicated people in charge. Simple tactics, but easier said than done.
And they do this at many levels; people come to the camp with a wide variety of backgrounds, physical capabilities, and education, and the Dzaleka coordinators seem to do an admirable job of catering to as many groups as they can. We saw, for example, a beautiful computer lab designed for those refugees seeking higher education credits, with at least 20 shiny PCs and a central projector that would’ve been at home in any US college campus building. And the computers actually worked! They hadn’t broken and then been abandoned for lack of technical know-how! There was an IT guy on hand to fix any issues and about a dozen young men and women working at the consoles, waiting for their Skyped-in lecture to start. And the whole building is powered with solar panels on the roof. Amazing.
And then, for those refugees less likely to pursue college coursework, the wider camp is a remarkable testament to some UN flunky’s love of organization. All the typical community institutions – churches, medical clinics, even rec halls – are located prominently in the camp and have the staff and at least the minimum amount of supplies necessary to do their jobs well. (Dr. Sethi’s already trying to figure out how to bring a derm clinic to the camp next year.)
And the community itself is much, much more than a thrown-together tent city. Upon arrival, every refugee is issued a designated plot, within walking distance of a standardized water pump and with a built-in connection to electricity. They’re free to build whatever kind of home suits the needs of their family, and are likewise free to grow whatever kind of crop they want on their allocated piece of farm land. The streets are wide enough to stay clear and the buildings, made of some sort of mud-concrete mixture, feel permanent. Chickens and lambs and goats putter around through back yards. The people look busy – no one is simply waiting for handouts. In truth, Dzaleka seemed like a much more pleasant place to live than many of the rural Malawian villages we’ve seen so far this month. It’s also the only place I’ve ever seen in East Africa where the homes actually have addresses – every door is marked with a letter and number combination which helps the camp coordinators find particular refugees in case of emergencies.
It also struck me, as I was walking around, how a camp like Dzaleka is a bit of an economist researcher’s dream. It’s a large, essentially captive population, with a steady stream of known inputs (rations of oil, rice, beans, etc.). What happens to this community? Classic Econ 101 stuff, it turns out. You get an amazing second-hand market – we walked by folks selling everything from Disney blankets to traditional Ghanian fabrics to shovel heads. A few businesses can exist targeting only a specific subpopulation in the camp – we saw an Ethiopian restaurant, for example – but most business survive by catering to the needs of all refugees, willing to sell to anyone with something worth trading for. You also get the development of an entertainment business: we poked out heads into a Dzaleka “movie theater”, a dark home with benches where patrons can pay 20 kwacha (about 8 cents) for the privilege of watching 4 hours of whatever DVD happens to be playing in the ancient TV at that time.
You also get the formation of new alliances. Our tour guide, a young man named Thierry from the DRC, actually met his wife in the refugee camp. He fled the Congo at age 25 for reasons he preferred not to say (though he does bear scars from bullet wounds on his right leg), traveling with his mother across the border in the back of a pick-up truck. A few months after arriving, he met a lovely woman also from the DRC – and the rest is history. They’re both learning English now, wondering whether the powers that be might see fit to relocate them to Australia, or the US, or Norway – countries that tend to accept the most camp refugees, apparently.
Because no matter what their training or education, or how useful they’d be in the “Warm Heart of Africa”, Dzaleka refugees are in no way eligible to become Malawi citizens. Likewise for babies born to refugee parents. They are resigned to wait – wait in the camp, wait to be returned home, wait to be sent on to a brand new life. Our guide Thierry told me he simply doesn’t think about it. As far as he can tell, he has no say in the matter. So in the meantime he’s simply living his life at camp, with his young wife, relaxing in the evenings by watching DRC music videos on the TV in their 2.5 room home. Not the terrible life I worried I would see, but a strange one nonetheless.
Hmm. That was a long post. Apparently my brain had a lot to get out. Apologies.
We’re on a bit of a lockdown for tomorrow’s protests – no going to the hospital, no venturing outside the house walls, and no wearing of red or blue (political party colors here). If my internet card holds out a little longer and there’s anything of interest to write, maybe I’ll do a little live blogging. So far, all is calm and all is bright.
We’re on a bit of a lockdown for tomorrow’s protests – no going to the hospital, no venturing outside the house walls, and no wearing of red or blue (political party colors here). If my internet card holds out a little longer and there’s anything of interest to write, maybe I’ll do a little live blogging. So far, all is calm and all is bright.
Monday, September 19, 2011
Clinical Judgment
Well, that went quick. All of a sudden, we’ve just finished our last day of clinic. It’s a bit of an abrupt ending, too; usually we go every weekday, but a combination of special opportunities and somewhat perilous political situations will be keeping us out this week. Tuesday and Thursday we’re off to a nearby refugee camp and a leprosy clinic, respectively. And Wednesday…well, Wednesday is a bit of a toss-up. After canceling them earlier in the month, the Malawian opposition has decided that their protests are now back on, and scheduled for the 21st. Most of the ex-pats and Malawians I’ve talked to don’t seem too impressed; we might end up staying home in our compound for the equivalent of a loud town meeting. But then, given that the last protests ended in 20 civilian deaths, seems like it might be better to err on the side of caution. We’ll see.
In any case, today’s clinic was a nice snapshot in terms of the most important things I’ll take away with me from this odd little rotation. For one, regardless of whether I’ll ever use it again in my future career, I’ve become pretty confident in my tropical derm skills. Chicken pox? Pellagra? Nima-soap-induced skin reaction? (Nima is a brutal soap used here.) I’m on it. Rashes are my cup of tea. I got to see only the most rare and exciting patients for three weeks, with virtually none of the boring! It’s like eating only the top of the dermatology muffin! Working in the clinic here reminded me of all the fun parts of derm that appeal to me – while simultaneously reminding me how infrequently these types of derm patients show up in the US dermatologists’ offices. Just what I wanted.
For two, this has been one of the first rotations where I’ve actually been a teacher as well as a student. The medicine hierarchy puts third-year medical students at the very last rung on the ladder; they are there only to receive wisdom, not to pass it on. (I actually got reprimanded last year for trying to remind a patient what had just happened in her recent surgery. “You are here to watch and to learn, and nothing else,” my resident yelled.) But this month, amazingly, there were people around who know less than I do. I shared a clinic room with one of the second-year students for two weeks, and I tried my best to be like the senior students I loved during my early years – full of information, not overbearing, willing to let the younger student try her hand at some smaller tasks and take credit for any successes we had as a clinical team. The last one is particularly hard, I found – it’s hard to not want all the glory for the application of your hard-earned knowledge – but I think I got better. We also had Malawian nursing students with us, rotating through for a week in their training. Teaching through a language barrier is extra tricky, but I was really happy with the way our morning with today’s student turned out: after I took the time to explain all about herpes zoster (aka shingles) for an early morning patient, our student triumphantly identified a second zoster patient who walked in a few hours later. There were high fives. Instantly gratifying.
And then, as with every international health experience, there are the moments of doubt. On Saturday, our visiting surgeon had operated on an albino woman with several horrific skin cancers on her face. Two cancers came off rather simply, with an elegant skin flap to cover the open space on her cheek, but the third…the third was a monster. Almost 7 inches wide, it clearly had been growing for years and looked like it actually reached down to her skull in the center. (The patient had taken to simply covering it with a head scarf at all times – we didn’t even realize it was there until someone finally thought to have her take it off.) Our surgeon decided to operate on her, even if there was only a partial chance of a cure – with her skull exposed like that, it seemed like only a matter of time before the cancer crossed through the bone and gave the patient meningitis. But during the operation, after cutting carefully for a few hours, our surgeon realized that the cancer was already in the bone. Simply removing the skin around the cancer would do no good. So we sewed the patient’s forehead right back up, and sent her to the general hospital for wound care.
Today, 48 hours later, we saw her back – and her face is clearly infected. Part of the skin flap has died and turned black; there’s nothing to do for that except wait for it to slowly scar over. Wound care at the hospital has been less than ideal – she didn’t have a fever yet, but there was pus and a distinct odor around the stitches.
We’ll start her on antibiotics, and hope that her sisters at home can do the diligent wound care that she’ll need for the next few weeks. But I really found myself wondering – what have we done? This woman was in no pain before we took her to the operating table. True, the smaller cancers are gone. But the one that’s going to kill her is still there, and untreatable in Malawi. And maybe we’ve even shortened her lifespan by exposing her to these infections. And next week, the two main doctors involved in her care will be half a world away, back in the US, inaccessible.
Part of me feels that to do nothing, to not have tried to remove the biggest cancer, would be just as morally blameworthy, if not more so. But it’s hard to reconcile the fact that, all things considered, her outcomes are no better, and probably worse, than if we had never treated her at all. There are many other patients that I think were genuinely helped by our presence here, but it’s hard to remember that when you’re looking this poor woman’s face.
Learning, teaching, then reevaluating your work in an ethical light – a worthwhile clinical experience, overall. Looking forward to the refugee camp tomorrow.
In any case, today’s clinic was a nice snapshot in terms of the most important things I’ll take away with me from this odd little rotation. For one, regardless of whether I’ll ever use it again in my future career, I’ve become pretty confident in my tropical derm skills. Chicken pox? Pellagra? Nima-soap-induced skin reaction? (Nima is a brutal soap used here.) I’m on it. Rashes are my cup of tea. I got to see only the most rare and exciting patients for three weeks, with virtually none of the boring! It’s like eating only the top of the dermatology muffin! Working in the clinic here reminded me of all the fun parts of derm that appeal to me – while simultaneously reminding me how infrequently these types of derm patients show up in the US dermatologists’ offices. Just what I wanted.
For two, this has been one of the first rotations where I’ve actually been a teacher as well as a student. The medicine hierarchy puts third-year medical students at the very last rung on the ladder; they are there only to receive wisdom, not to pass it on. (I actually got reprimanded last year for trying to remind a patient what had just happened in her recent surgery. “You are here to watch and to learn, and nothing else,” my resident yelled.) But this month, amazingly, there were people around who know less than I do. I shared a clinic room with one of the second-year students for two weeks, and I tried my best to be like the senior students I loved during my early years – full of information, not overbearing, willing to let the younger student try her hand at some smaller tasks and take credit for any successes we had as a clinical team. The last one is particularly hard, I found – it’s hard to not want all the glory for the application of your hard-earned knowledge – but I think I got better. We also had Malawian nursing students with us, rotating through for a week in their training. Teaching through a language barrier is extra tricky, but I was really happy with the way our morning with today’s student turned out: after I took the time to explain all about herpes zoster (aka shingles) for an early morning patient, our student triumphantly identified a second zoster patient who walked in a few hours later. There were high fives. Instantly gratifying.
And then, as with every international health experience, there are the moments of doubt. On Saturday, our visiting surgeon had operated on an albino woman with several horrific skin cancers on her face. Two cancers came off rather simply, with an elegant skin flap to cover the open space on her cheek, but the third…the third was a monster. Almost 7 inches wide, it clearly had been growing for years and looked like it actually reached down to her skull in the center. (The patient had taken to simply covering it with a head scarf at all times – we didn’t even realize it was there until someone finally thought to have her take it off.) Our surgeon decided to operate on her, even if there was only a partial chance of a cure – with her skull exposed like that, it seemed like only a matter of time before the cancer crossed through the bone and gave the patient meningitis. But during the operation, after cutting carefully for a few hours, our surgeon realized that the cancer was already in the bone. Simply removing the skin around the cancer would do no good. So we sewed the patient’s forehead right back up, and sent her to the general hospital for wound care.
Today, 48 hours later, we saw her back – and her face is clearly infected. Part of the skin flap has died and turned black; there’s nothing to do for that except wait for it to slowly scar over. Wound care at the hospital has been less than ideal – she didn’t have a fever yet, but there was pus and a distinct odor around the stitches.
We’ll start her on antibiotics, and hope that her sisters at home can do the diligent wound care that she’ll need for the next few weeks. But I really found myself wondering – what have we done? This woman was in no pain before we took her to the operating table. True, the smaller cancers are gone. But the one that’s going to kill her is still there, and untreatable in Malawi. And maybe we’ve even shortened her lifespan by exposing her to these infections. And next week, the two main doctors involved in her care will be half a world away, back in the US, inaccessible.
Part of me feels that to do nothing, to not have tried to remove the biggest cancer, would be just as morally blameworthy, if not more so. But it’s hard to reconcile the fact that, all things considered, her outcomes are no better, and probably worse, than if we had never treated her at all. There are many other patients that I think were genuinely helped by our presence here, but it’s hard to remember that when you’re looking this poor woman’s face.
Learning, teaching, then reevaluating your work in an ethical light – a worthwhile clinical experience, overall. Looking forward to the refugee camp tomorrow.
Saturday, September 17, 2011
Running for Office
I’m not a great runner – I have an inefficient stride, little floppy ankles, and a tendency to wince involuntarily at the mention of marathons. But here in Malawi, where so much of my time is spent behind the walls of some “mzungu-safe” institution (even our house in Lilongwe has barbed wire atop the outside walls), the idea of ranging freely is very appealing. So my little sunburnt ears perked up when one of the housestaff here mentioned a previous runner’s solution – the Lilongwe golf course.
Running, or any non-work-oriented exercise, for that matter, isn’t really done in Malawi. (To be honest, I’ve never really seen “joggers” of the American type outside of the US in any of my trips; even England and Western Europe don’t really seem to do gyms or laps or any of those purposeful-wasting-of-calories activities.) So trying to go on a simple run can be a bit overwhelming. In addition to the usual special attention one gets for being a tall white woman in the streets, you get twice as many stares for being a damp one wearing shorts. I’ve never been so conscious of my knees in my life. It’s enough to keep a little globe trotter inside.
But the golf course! Brilliant! If I can handle the stares for a short half-mile trot to the opening gates, I get all the wide open space I can handle – as long as I get out before 7 AM. I’m not a morning excerciser at all in the States, and I’m only a sporadic one here. But if I can drag my lazy bum out of bed early enough, trotting around the course in the breaking dawn is actually a lot of fun. As you might imagine, the “greens” in a golf course where it hasn’t rained in four months are…not so green. Lots of dried grasses and red-brown dirt underfoot. It’s also much less manicured than the golf courses of home – lots of leaping over holes and dodging fallen “sausages” from the sausage trees. Between that and the fact that there are almost no signs to orient me, it’s a bit more like trail running than jogging. I even used the position of the sun to navigate when I got turned around last week. A run where you can get covered in dirt and really quite lost is pretty exciting.
And today’s was even extra exciting! Celebrity sighting! On most runs I only see one or two workers clearing brush, if anyone at all, but this morning I was running amid a flurry of activity: police officers, people wearing important-looking Safety Orange vests, and drummers audible in the distance. I eventually gathered that some sort of tournament was underway, and headed for the exit at my usual time – only to be stopped for the presidential motorcade! Bingu wa Mutharika himself! I saw him in the back of the presidential limo, looking a bit grumpy but clad in a fine-looking polo shirt and headed for the clubhouse. Guess Malawi’s current political imbroglio (ahem) is no reason not to get a few holes in.
Running, or any non-work-oriented exercise, for that matter, isn’t really done in Malawi. (To be honest, I’ve never really seen “joggers” of the American type outside of the US in any of my trips; even England and Western Europe don’t really seem to do gyms or laps or any of those purposeful-wasting-of-calories activities.) So trying to go on a simple run can be a bit overwhelming. In addition to the usual special attention one gets for being a tall white woman in the streets, you get twice as many stares for being a damp one wearing shorts. I’ve never been so conscious of my knees in my life. It’s enough to keep a little globe trotter inside.
But the golf course! Brilliant! If I can handle the stares for a short half-mile trot to the opening gates, I get all the wide open space I can handle – as long as I get out before 7 AM. I’m not a morning excerciser at all in the States, and I’m only a sporadic one here. But if I can drag my lazy bum out of bed early enough, trotting around the course in the breaking dawn is actually a lot of fun. As you might imagine, the “greens” in a golf course where it hasn’t rained in four months are…not so green. Lots of dried grasses and red-brown dirt underfoot. It’s also much less manicured than the golf courses of home – lots of leaping over holes and dodging fallen “sausages” from the sausage trees. Between that and the fact that there are almost no signs to orient me, it’s a bit more like trail running than jogging. I even used the position of the sun to navigate when I got turned around last week. A run where you can get covered in dirt and really quite lost is pretty exciting.
And today’s was even extra exciting! Celebrity sighting! On most runs I only see one or two workers clearing brush, if anyone at all, but this morning I was running amid a flurry of activity: police officers, people wearing important-looking Safety Orange vests, and drummers audible in the distance. I eventually gathered that some sort of tournament was underway, and headed for the exit at my usual time – only to be stopped for the presidential motorcade! Bingu wa Mutharika himself! I saw him in the back of the presidential limo, looking a bit grumpy but clad in a fine-looking polo shirt and headed for the clubhouse. Guess Malawi’s current political imbroglio (ahem) is no reason not to get a few holes in.
Friday, September 16, 2011
White to Bare Arms
Albinism Awareness Day! Man, am I aware right now. The fabric sign tied to the front of the tent actually said "Albino Awareness Day", but apparently this is something of a politically incorrect term - these are "patients with albinism" rather than "albinos". It's all about not letting your skin condition define you. I can get behind that. (I will now insist on being called a patient with mzunguism.) But typing out "patients with albinism" each time on this blog post will get a little boring, so I'm going to use the shorthand; no offense meant.
Today's event was definitely in keeping with my experience with previous conference-type events in Tanzania. As a general rule, the speeches are more boring than in the US - but the dancing, ululating, and music are much better. The crowd trickled slowly in from about 8:30 AM on, both on foot and in big group buses. We probably ended up with about 150 folks in total. I'd say about 65% of the crowd was composed of albinos, with the other 35% being their darker skinned family members. Albinism is a recessive trait, which means you often see non-albino parents with albino children, or groups of siblings with two dark faces and two white. If you have one albino parent and one non-albino parent (rather unusual, given the stigma against albinos), you can also end up with an albino mom carrying a little non-albino baby on her back.
The skin damage in the crowd also varies enormously. There are a few people like the event coordinator, Boniface Masa, our Albino Awareness Coordinator Extraordinaire. He’s an extremely well-educated albino man with similarly educated parents, who took extra care to protect him from the sun from a young age. He’s always snappily dressed for maximum sun protection, with long sleeves, long pants, topped with a wide-brimmed blue hat. And his skin is flawless. (Lives up to his name.)
But there were so many faces in the crowd who clearly had been exposed to far too much equatorial sun. Melanin, the skin pigment that’s missing in albinism, not only makes us browner but also serves as a sort of shield against UV light. Without it, albinos burn even easier than those red-haired Irish folks you see – and suffer the long-term consequences at much, much younger ages. There were lots of kids with horrible-looking infected chronic sunburns, and lots of teenagers and young adults with permanent dark blotches on their faces and arms (the places that catch the sun). A number of the older folks also had obvious skin cancers in the same spots; I could see our visiting skin surgeon, Dr. Schmultz, checking them out with a practiced eye, no doubt plotting her afternoon clinic schedule.
Between the sun damage, the vision problems (melanin plays a big role in our retinas, so albinos have poor eyesight), and the many stigmas and pejorative beliefs attached to albinism in East Africa, albinos are certainly an outcast group in Malawi. But yesterday’s event, the 5th annual AAD, seemed like an important day in terms of turning that around. For one, it was fun – lots of little albino kids dancing together in their new wide-brimmed hats. (I put on my old mzungu hat and headed out there to join in, trying to do that isolated butt moving thing that every little kid in Malawi can do but just makes me look like I’m losing my balance.) For two, it’s a good opportunity to make sure albinos can stock up on and learn how to use their anti-sun weapons; we gave out boxes full of donated sunblock, sunglasses, and of course the ubiquitous sensible hats.
But for three, it’s a chance for these patients with albinism to see not only are they not alone, but that they’re not inherently limited by their skin. Seeing other albinos has the potential to changes albinos’ perspectives about themselves, especially seeing albinos as well-to-do and well-spoken as Boniface and some of the other event organizers. Dr. Sethi says that she always sees the dark-skinned mothers with albino infants watching Boniface very intently during AAD; they’re starting to think big, she suspects.
So an impressive event, with an appropriately impressive flood of albino patients into our clinic yesterday and continuing today. It was a bit odd to suddenly see so much pale skin in clinic after two weeks of only dark. Lots of opportunities to do some sunblock-related education, commend appropriate hat usage, and zap some pre-cancers using liquid nitrogen, my favorite dermatology tool of all time. It looks like the dry ice they use in witches’ cauldrons at Halloween, if only the witches wore latex gloves. Love that stuff.
Elephant stalking tomorrow. Tell no one.
Today's event was definitely in keeping with my experience with previous conference-type events in Tanzania. As a general rule, the speeches are more boring than in the US - but the dancing, ululating, and music are much better. The crowd trickled slowly in from about 8:30 AM on, both on foot and in big group buses. We probably ended up with about 150 folks in total. I'd say about 65% of the crowd was composed of albinos, with the other 35% being their darker skinned family members. Albinism is a recessive trait, which means you often see non-albino parents with albino children, or groups of siblings with two dark faces and two white. If you have one albino parent and one non-albino parent (rather unusual, given the stigma against albinos), you can also end up with an albino mom carrying a little non-albino baby on her back.
The skin damage in the crowd also varies enormously. There are a few people like the event coordinator, Boniface Masa, our Albino Awareness Coordinator Extraordinaire. He’s an extremely well-educated albino man with similarly educated parents, who took extra care to protect him from the sun from a young age. He’s always snappily dressed for maximum sun protection, with long sleeves, long pants, topped with a wide-brimmed blue hat. And his skin is flawless. (Lives up to his name.)
But there were so many faces in the crowd who clearly had been exposed to far too much equatorial sun. Melanin, the skin pigment that’s missing in albinism, not only makes us browner but also serves as a sort of shield against UV light. Without it, albinos burn even easier than those red-haired Irish folks you see – and suffer the long-term consequences at much, much younger ages. There were lots of kids with horrible-looking infected chronic sunburns, and lots of teenagers and young adults with permanent dark blotches on their faces and arms (the places that catch the sun). A number of the older folks also had obvious skin cancers in the same spots; I could see our visiting skin surgeon, Dr. Schmultz, checking them out with a practiced eye, no doubt plotting her afternoon clinic schedule.
Between the sun damage, the vision problems (melanin plays a big role in our retinas, so albinos have poor eyesight), and the many stigmas and pejorative beliefs attached to albinism in East Africa, albinos are certainly an outcast group in Malawi. But yesterday’s event, the 5th annual AAD, seemed like an important day in terms of turning that around. For one, it was fun – lots of little albino kids dancing together in their new wide-brimmed hats. (I put on my old mzungu hat and headed out there to join in, trying to do that isolated butt moving thing that every little kid in Malawi can do but just makes me look like I’m losing my balance.) For two, it’s a good opportunity to make sure albinos can stock up on and learn how to use their anti-sun weapons; we gave out boxes full of donated sunblock, sunglasses, and of course the ubiquitous sensible hats.
But for three, it’s a chance for these patients with albinism to see not only are they not alone, but that they’re not inherently limited by their skin. Seeing other albinos has the potential to changes albinos’ perspectives about themselves, especially seeing albinos as well-to-do and well-spoken as Boniface and some of the other event organizers. Dr. Sethi says that she always sees the dark-skinned mothers with albino infants watching Boniface very intently during AAD; they’re starting to think big, she suspects.
So an impressive event, with an appropriately impressive flood of albino patients into our clinic yesterday and continuing today. It was a bit odd to suddenly see so much pale skin in clinic after two weeks of only dark. Lots of opportunities to do some sunblock-related education, commend appropriate hat usage, and zap some pre-cancers using liquid nitrogen, my favorite dermatology tool of all time. It looks like the dry ice they use in witches’ cauldrons at Halloween, if only the witches wore latex gloves. Love that stuff.
Elephant stalking tomorrow. Tell no one.
Wednesday, September 14, 2011
Stigma
Prior to coming to Malawi, all we rotators got a little booklet of information, which we all dutifully printed out and arrived off the plane clutchingly tightly to our chests. Most of it is dermatology information, but there's also a bit in the way of useful Chichewa phrases ("Kuyabwa?" = "Itchy?") and some general cultural info about Malawian society. One of the paragraphs that caught my eye was dedicated to manners and social graces. Malawians are very polite, it said. They prefer to ask questions in euphimistic terms and may sometimes answer questions with what they percieve to be the answer that the questioner wants, rather than the truth.
I'm always skeptical of texts that label a whole people as polite, or brusque, or any personality trait for that matter. But I have noticed that particularly in relation to more delicate medical questions, some of our medical conversations in clinic don't go very easily. With sick babies or children, for example, we're taught in the United States to inquire whether the kid is still urinating normally, or producing the same number of wet diapers - it's a good way to tell whether the child is dehydrated. (Less in, less out.) But the Malawian nurse who helps translate our questions is always reluctant to ask this question of patients; I get the impression he considers it rude. I've been trying to work around it by asking more questions about eating, and whether the child is lethargic or sleepy, which seem to be acceptably polite, but it's not quite the same information.
And then there's the HIV question. Even in the US, of course, this is a tricky question to ask. But there are quite a few skin conditions that really only exist in HIV+ patients; it's important to know their status, whether postive, negative, or unknown, so that you can begin to narrow down what exactly those itchy bumps are.
We had two or three female patients yesterday with rather severe itchy bumps (later diagnosed as a "papular pruritic eruption" - not fun), each of whom looked so classic for a HIV-related rash that we immediately asked for her HIV status. Each woman quickly replied that she was negative for HIV, and that she'd been tested within the past month or so. Huh, we said. What else could it be? We hemmed and hawed for a bit, then wondered if it might be a reaction to another drug she'd recently taken. Each Malawian carries a little notebook with a handwritten record of all her medical visits, so we quickly paged through past encounter notes, looking for clues. And for each of the three women, we saw CD4 cell counts and a "reactive" HIV test - pretty much knockdown evidence that they were HIV+.
And so we awkwardly asked again - was she SURE she wasn't HIV+? Two women quietly replied that, indeed they were. And that was the end of it - no explanation for the initial denial. We took it in stride and set about getting her medicines set up. But the third woman continued to reply that she was negative, despite a positive test two years prior and multiple appointments afterwards at an HIV center. By the cell counts written in her book, she was actually even a candidate to begin anti-retroviral therapy, or ART. (Malawian hospitals don't begin treatment for HIV until patients reach a certain nadir in their immune systems.) But there had either been a complete breakdown in communication in her encounters with the HIV center, or she was purposefully choosing to provide us with false information.
Having three of these encounters in a single morning, it was hard for me to pick apart how much of this was personal denial versus social avoidance of impolite subjects versus the overwhelming stigma still attached to HIV in East Africa (and everywhere else in the world, honestly). About 11-12% of Malawi's population is thought to be HIV+. The government finally started providing ART about 5 years ago, and health outcomes have certainly improved, but it seems like medical treatment can only take a country so far if there's still such a social and personal reluctance to acknowledge one's condition publicly and seek treatment.
And speaking of stigma - it's Albinism Awareness Day today at Kamuzu Central Hospital! No doubt you have heard about it on the TV and radio. We have been advertising heavily. Word is that whole bus-fulls of folks are coming north from Dedza just for the event. Very exciting. Looking forward to giving out lots and lots of sunblock and sensible wide-brimmed hats.
I'm always skeptical of texts that label a whole people as polite, or brusque, or any personality trait for that matter. But I have noticed that particularly in relation to more delicate medical questions, some of our medical conversations in clinic don't go very easily. With sick babies or children, for example, we're taught in the United States to inquire whether the kid is still urinating normally, or producing the same number of wet diapers - it's a good way to tell whether the child is dehydrated. (Less in, less out.) But the Malawian nurse who helps translate our questions is always reluctant to ask this question of patients; I get the impression he considers it rude. I've been trying to work around it by asking more questions about eating, and whether the child is lethargic or sleepy, which seem to be acceptably polite, but it's not quite the same information.
And then there's the HIV question. Even in the US, of course, this is a tricky question to ask. But there are quite a few skin conditions that really only exist in HIV+ patients; it's important to know their status, whether postive, negative, or unknown, so that you can begin to narrow down what exactly those itchy bumps are.
We had two or three female patients yesterday with rather severe itchy bumps (later diagnosed as a "papular pruritic eruption" - not fun), each of whom looked so classic for a HIV-related rash that we immediately asked for her HIV status. Each woman quickly replied that she was negative for HIV, and that she'd been tested within the past month or so. Huh, we said. What else could it be? We hemmed and hawed for a bit, then wondered if it might be a reaction to another drug she'd recently taken. Each Malawian carries a little notebook with a handwritten record of all her medical visits, so we quickly paged through past encounter notes, looking for clues. And for each of the three women, we saw CD4 cell counts and a "reactive" HIV test - pretty much knockdown evidence that they were HIV+.
And so we awkwardly asked again - was she SURE she wasn't HIV+? Two women quietly replied that, indeed they were. And that was the end of it - no explanation for the initial denial. We took it in stride and set about getting her medicines set up. But the third woman continued to reply that she was negative, despite a positive test two years prior and multiple appointments afterwards at an HIV center. By the cell counts written in her book, she was actually even a candidate to begin anti-retroviral therapy, or ART. (Malawian hospitals don't begin treatment for HIV until patients reach a certain nadir in their immune systems.) But there had either been a complete breakdown in communication in her encounters with the HIV center, or she was purposefully choosing to provide us with false information.
Having three of these encounters in a single morning, it was hard for me to pick apart how much of this was personal denial versus social avoidance of impolite subjects versus the overwhelming stigma still attached to HIV in East Africa (and everywhere else in the world, honestly). About 11-12% of Malawi's population is thought to be HIV+. The government finally started providing ART about 5 years ago, and health outcomes have certainly improved, but it seems like medical treatment can only take a country so far if there's still such a social and personal reluctance to acknowledge one's condition publicly and seek treatment.
And speaking of stigma - it's Albinism Awareness Day today at Kamuzu Central Hospital! No doubt you have heard about it on the TV and radio. We have been advertising heavily. Word is that whole bus-fulls of folks are coming north from Dedza just for the event. Very exciting. Looking forward to giving out lots and lots of sunblock and sensible wide-brimmed hats.
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