My favorite patient, August, invited me to visit the leprosy settlement adjacent to the hospital where he lives. Dr. Yousuf took me there. I found August will all of his friends laughing and talking excitedly over chili peppers and chopped mushrooms and other vegetables they were preparing to cook. These are people who have deformities from leprosy and do not feel comfortable living out in the public where stigma hurts them deeply. So they live like one big happy family in this settlement. Actually I found it to have collegiate community atmosphere; people hanging out together on porches– young people living in their own apartment dorms without parents because parents will sometimes abandon their children who contract leprosy. The settlement is self-sustaining: there are farms, restaurants, shops, bicycle repair shops, hairdressers, mosques, and anything you can imagine.
In the afternoon I had such a contrasting experience to the morning in the settlement, it was almost jarring. I had promised one of the physiotherapists that I would go into the city with her daughter who was excited to meet an American. I was picked up in the afternoon. On the way to Jakarta in 3 hours of traffic I discovered that the daughter and her friends were only 17-years old. They were high schoolers. This is going to be interesting, I thought, as they talked excitedly about boys and their favorite pop stars. I had no idea where they were taking me. I hoped we would be going to the Wayang museum. But it turned out they were taking me clubbing. I didn’t know what to do but go along with it. What can you do when you are 3 hours away from your home without language to communicate your concern or ask what is going on. So I went to the apartment with them and waited while they peeled off layers of clothing and caked on layers of make-up. “you should wear these” one of the girls told me, handing me a pile of sequins. There was a tube top and a mini mini skirt. I just can’t wear this kind of thing after India and Uganda where anything above the ankles is scandalous. So I opted for my Ugandan dress which is certainly not a clubbing dress but I like it and I imagined the club to be somewhat like the dance bars in Thailand (relaxed and low-key). But I could not have been further off. ” Le Club” had a $100 entry fee; it was high fashion VIP Jakarta. I felt out of place, annoyed about the cover charge, and hopelessly stuck. I can’t just go home and say look, this really isn’t my scene to my youngster friends because they were the only ones who could get me back to the hospital which is 3 hours away. So i just went along with all of it. I thought even if I feel slightly abducted by high schoolers, I can still have fun. I have learned by now how to surrender. So I did. And I did have fun. The club was fancy, spectacular laser lights cutting though the crowd and base throbbing to my heartbeat. This is Jakarta’s club scene. My friends had a great time as well and the whole night ended up being a great success.
Cecep, the father in my Indonesian family, took me on the mini culture tour of Indonesia. It is a park in Jakarta with all of the Indonesian islands represented as mini islands in a lake. There are structures from every tradition of architecture: Bali, Sumatra, Java, Lombok, Borneo, Nusa Tenngara, Kalimantan, Sulawesi, and others that I can’t even remember. Indonesia actually consists of between 17,500 and 18,000 islands. Can you believe that? And each inhabited island has a unique culture of food, clothing, architecture, stories, and even religions. Indonesia has a long history of human inhabitants. Homo erectus is thought to have inhabited Indonesia more than 1.5 million years ago. In 2003 archeologists found the remains of an early hominid called Homo floresiensis dating back appr 74,000 years. Wikipedia says these ancient people might have floated over to the Indonesian islands on bamboo rafts 100,000 years ago. Then homo floresiensis went extinct in 12,000 BCE after the eruption of a volcano on the island Flores. Again according to trusted source Wikipedia, people from Taiwan came to the Islands around 2000 BCE. Eventually Buddhism and Hinduism arrived and then Islam swept over the country giving Indonesia the highest population of Muslims in the world. The Dutch came in and ruined things like colonialists always do. I visited the court house in Jakarta where the Dutch used to hang Indonesian people. There is a dungeon in the building that my Indonesian friend Juwita refused to enter because she said what went on down there is too creepy and tragic. Torture.
Back to the mini culture tour: I noticed that one thread in the architectural styles from each Island was the emphasis on roof. All of the buildings had very prominent roofs. Why was roof so aesthetically important to these people at this time?A roof is a cap, or the head of a structure. It is the part that points to heaven. It is the part that isn’t directly connected to the earth. Maybe the people were less grounded— less interested in the heavy solid gestures but more inclined toward ones that lift the building up up up in a pointy roof towards heaven. I remember in our History of Architecture main lesson block all the way back in high school we spoke about how the gestures of buildings were actually reflections of how people identified in the world.
After work today I found a piano in the conference room! I asked the rehabilitation officer to help me find some young leprosy patients who would like to learn how to play the piano. The keyboard is really short. Only 4 octaves. So when I played Beethoven it had a very squished sound. But nevertheless, it is a keyboard and I can play it.
I spent most of the day in the medical records office (which does not have air-conditioning and I felt as though i might pass out if I have to rifle through another file in this heat!). It isn’t easy finding cases that we can use in our study because medical records here are not computerized. So I have to collect files, read them (most of the notes are in Indonesian) and write pertinent information in my notebook. I am so lucky to have the constant help of a wonderful translator. She is also really good at reading bad physician hand-writing because she grew up in the hospital. We have read through hundreds of files and so far we only have 33 cases that we can use (because we have to discard cases that have un-documented reactions or treatment regimes). So it isn’t easy. But it is astounding to peer into somebody’s life and see that these reactions took hold of their entire existence, bringing them into the hospital every month for years because of the severity. Some of our patients came to the hospital every month for two years with repeat ENL reactions that obviously don’t go away with prednisolone (which is the available and legal treatment for ENLs). We even found some cases of steroid dependency because such patients are on high dose corticosteroids for prolonged periods of time. It is such a mess. Prednisilone obviously isn’t working to treat ENLs for these patients and without proper treatment (thalidomide) they are succumbing terrible deformities.
I am working on a project that I consider to be extremely important. There are particular restrictions that prevent doctors from prescribing the preferred treatment for complications in leprosy such as repeat erythema nodosum leprosum (ENL) reaction. These inflammatory reactions occur because the immune system is reacting to the presence of live or fragmented M leprae bacilli. A reaction can cause irreversible damage to multiple organ systems, most prominently peripheral nerves. Under high pressure from the inflammatory response, nerve cells are compromised and can die. They do not grow back.
There is a highly restricted drug called Thalidomide that can treat ENL reactions effectively because of its anti-inflammatory action. In the 1950s Thalidomide was developed as an anti-nausea pill for morning sickness and a sedative. The problem is that the molecular structure of thalidomide is a racemer, and thus can flip between its mirror image forms (enantiomers). Unfortunately the mirror image of the active agent is teratogenic, causing birth defects in more than 10,000 babies whose mothers took thalidomide during pregnancy. So thalidomide was banned. In 1998 the FDA warranted its use in special cases including treating aggressive repeat ENL reactions. Indonesian law prohibits the use of thalidomide. My project, together with three doctors here at Sitanala hospital is to write a serial case report on patients at Sitanala who are good thalidomide candidates, request the drugs for a trial, conduct a longterm clinical trial for cases in this hospital and then if results are positive, push minister of health (MOH) and the Indonesian government to lift the ban on this drug for these patients. We might just present the serial case report and propose for the ban to be lifted without the clinical trial. I am excited about this project because it could really help these reaction patients who don’t respond to the current available treatments.
Reactions are the debilitating complications of leprosy. Throughout the world different kinds of patients present reactions differently depending on their genetics. But frequency of reactions also depends upon treatment of leprosy. I learned in Thailand that it is possible to prevent reactions from occurring by informed modifications to the multi-drug therapy (MDT) which is the antibiotic cocktail that treats M leprae.
In reading about thalidomide therapy I came across a piece of information that may explain why I observed such a low frequency of ENL reactions in the McKean hospital in Thailand. The physician at McMean explained to me that he used a different MDT regime for his patients so that they received higher and more frequent doses of clofazimine which is part of MDT. Clofazimine has anti-inflammatory properties as well as bactericide action. I read in Dr. Lockwood’s journal: “[the efficacy in treatment of ENL reactions with clofazimine] has never been formally tested but a multi-centre study of different chemotherapy regimes in patients with lepromatous leprosy showed that regimes containing clofazimine given 100 mg three times a week for 5 years were associated with a lower rate of ENL. The protective effect of clofazimine in preventing ENL is lost after 1 year when MB MDT is stopped. This beneficial effect will be shortened further if uniform MDT is introduced.” (Steven L, et al. 2007. The role of thalidomide in the management of erythema nodosum leprosum. Leprosy Review 78: 197–215).
The clever Thai doctor was using an already approved and available drug to prevent reactions in his patients after having treated similar cases at that hospital for 30 years. I commend his work. Because thalidomide is so heavily restricted, any other therapy that prevents or ameliorates ENL reactions is critical. But here in Indonesia patients present aggressive blaring ENL reactions and they deserve the chance to try thalidomide.
So our task is help patients get the medications they need to reduce morbidity from ENL reactions!!
The sky fills up with kites on Saturday. During my run with Yanti (mother) we passed throngs of boys whose eyes were fixed somewhere hundreds of feet in the air. Other boys riding bicycles had wedged empty plastic cups beneath their cantilever brakes so that the bikes roared like little motorcycles when the boys peddled. Many of these children are the sons and daughters of former leprosy patients who now live in the settlement.
I woke up early to attend “Friday Hospital Staff Aerobics”. The staff have organized a weekly exercise routine in which a trainer brings a small stage, enormous amps and speakers, a CD with the best combination of 80s, 90, and today. Mostly ladies attend. They dress in full “batik” with hijab despite the heat and movement. Male staff also join in although their movements are clumsier and they have trouble keeping up with the steps. The instructor leads the group in dance routines that they have clearly done before because they are experts, all moving together to the beat, kicking feet out, pumping arms, curling abdomens. I joined in, struggling to keep up. I couldn’t stop laughing. The idea of a whole hospital staff exercise routine anywhere else in the world sounds impossible, but here in this country of fun-loving, light-hearted people, it is the best idea. I had so much fun with the ladies (and three determined gentlemen) that it hardly felt like exercise at all. Afterwards I could tell we had moved quite a lot because our clothes were sopping wet and our faces red. They gave me hot sweet lentil soup (an interesting choice after a hot work out) but it was actually delicious and exactly what my body needed. I am excited to attend all the aerobics classes at Sitanala.
That afternoon I got to see my favorite patient. He is a very tiny man and his wife is a very large woman. They are sweet together. August (that is his name), invited me to the leprosy settlement. He wanted me to come to his home where he will show me around. He told me there is no stigma there. No problem. You can have any deformity and you will still be accepted. I can’t wait to visit him at his home. I just have to think of the right sort of gift to bring… ideas?
In the evening we piled into the minivan to go to the supermarket where we could buy all ingredients necessary for traditional pizza. I was excited to share something with this family that has given me so much. The supermarket pretty much blew my mind. It is nestled deep inside a posh and intoxicating super mall. There are designer shops glittering behind glass, technology whizzing and whirring and flashing, people people everywhere not looking at each other, but having eyes only for the things that pop out of advertisements capturing everyone’s attention. There was too much to see. My brain felt overwhelmed. Finally we arrived at the super supermarket. It was sparkling just like the rest of the mall and stocked with imported olive oil, tomato sauce, flour, mozzarella cheese, and all other worldly delights. We got all lost in the supermarket and ended up getting home too late for pizza making.