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.