Charminar

This weekend I went out with Jann, Chad, David, Natasha, and a collegue of Jann’s husband named Debbie. We drove down to the “old city” to visit Charminar, which is a major landmark in Hyderabad.
The CharminarCharminar translates to mean “four minarets.” It is located in a very Muslim part of town. Hyderabad is about half Muslim and half Hindu, and Christianity is gaining hold. Unlike many parts of India, the Hindus and the Muslims co-habitate really harmoniously here. The monument was built in the late 16th century supposedly to thank Allah for answering a prayer of the king. On Fridays the area is flooded with devotees who come to the area to worship. Charminar is a square structure, with towers on four corners, and arches on each side. It’s beautiful.
Surrounding Charminar is a huge market which extends about a kilometer in all four cardinal directions. The street on the south side is jam-packed with shops selling fabrics, and glittering bangles. And when I say glittering, I mean glittering. Jann and I went into one of the small shops to purchase a pair of bangles. David followed to try and get a picture, and we all almost had a seizure. The bangles are brightly colored and set with rhinestones and glitter that has been enameled over. The shopkeepers really play this up, installing bright lights that beam down into the counters. The intense light refracts in the rows and rows of bangles and sends sparkles everywhere. My bangles are blue, green and gold. I liked them because they reminded me of the peacocks in india.

The east side of Charminar was full of vendors selling everything from pocket watches to handmade perfumes. We stopped to watch a man grinding ginger and gardenia flowers down, making a sweet smelling extract. We also saw many beggars, most of which were terribly disfigured. I really struggle with the homeless and destitute out on the street here. Mostly because I don’t understand how to effectively help them, or how to emotionally process the magnitude of poverty and suffering. I looked to see if any of them were notably afflicted with leprosy, but that didn’t seem to be the case.

india-337-sm-res
The Pom! so good.

The north side of Charminar is a huge fruit market. I loved all the noise and the color. Vendors pushed carts piled high with guavas, oranges, mangos, grapes and pomegranates! (I looove pomegranates). The fruits, like oranges, were often stacked in pyramids or piled high in baskets. On the top of the display there were fruits that were cut open, exposing their sweet interior, in order to tempt hungry shoppers. I found myself inevitably drawn to the shiny red pomegranate seeds (but ultimately opted to wait and eat the poms waiting in my refrigerator for me at home.) Some men carried long stalks that still had bunches of bananas attached to them. These men would unsheathe a large knife and slash off a bunch, bargaining with a customer for the best price. For the record, the fruit in india is amazing. It will be hard to adjust to the produce back home, especially the pomegranates (can you tell I’m fixated? I’m going to need a 12 step program to get off the pom).

The west side of Charminar I found to be pretty strange. Its “dental row.” We walked up and down just to see it, because trust me, none of us was about to get a root canal in the old city. Dental row is hard to articulate, but imagine an open air market hybridized with a dentists office. But not a clean, sterile, professional dentist’s office. They were kind of dark and creepy dentists office, like you might see in a haunted house, or Little Shop of Horrors. Oftentimes the “offices” would be about the size of a garage, open in the front so you could see inside. Inside I’d see an old dentists chair, and some faded posters advertising braces or cavity filling.  Behind the dentists chair would be a table containing dental tools.  In one of the corners of the room, waiting patients could sit on a wooden bench. Most of the offices were empty, but I caught the eye of a few people sitting on those benches. The anxious look of waiting for the dentist seems to be pretty universal. That whole strip was pretty bizarre.

With the exception of the west side, the whole market was packed with people.  Kukatpally, where I live, is a traditionally Hindu area and is starting to undergo some growth and renovation due to the nearby “high tech city” which is spilling over into the suburb.  The result of that is boutiquey shops (like where I bought my dresses), new businesses, a growing local economy, and a more cosmopolitan perspective.  Prior to my visit to Charminar, I haven’t had a ton of exposure to the Muslim culture in Hyderabad. And certainly not the like that of the “old city.”

Most strikingly, a large majority of the women I saw were wearing full Burqas. Black. So in addition to the long cloak that reaches down to their shoes, the women’s heads and faces are covered by thick, dark cloth.  Tiny slits allow for visibility.  When I looked at these women’s eyes, they usually showed surprise.

I would imagine they were looking me in surprise because while  they were fully burqa-ed, I was wearing long capris and a t-shirt (which might as well have been a bathing suit by the looks I was getting.)   I’d also like to point out that the temperature was over 90 degrees today. How these women don’t pass out from heat stroke is beyond me.

I’d rather not get into the whole discussion of culturally oppressed women right now, because I recognize that the burqa is (in theory) for the protection of the woman’s dignity. Rubina and I talk about it alot. She is very devotely Muslim, but refuses to wear one. She claims that in many cases, strict Muslim marriages are a form of slavery. Consequently she also refuses to wed anyone.  I think its fair to say that for the most part, the women out here don’t wear burqas based on their own free choice, but rather at the dictation of their male family members. (Have I mentioned, by the way, that I think Rubina is a really amazing woman? She’s inspiring.)

I was glad to be flanked by Chad and David on each side, who gave glaring looks back at the men who stared at my arms and ankles. At one point we (half) jokingly talked about buying me a burqa, which were available for purchase all around Charminar. The good news was that whenever we needed to cross the street, the traffic all but came to a halt.

At the end of the long afternoon in the Old City, we all piled in the car and went out for dinner. We ate at a beautiful italian (italian!!) restuarant, and I ate my dinner with a fork. It may seem inconsequential to you, dear reader, but this is the first fork I have used in over a month. I was really excited!

So to sum it all up: another day, another adventure in India!

lots of love,

g

Charminar
Charminar

New game

Today I had my first day in leprosy outpatient. I’m shadowing Dr. Bhaskarao, who is in his later 60s I would guess, and has a very fun personality. He is short, round, wears wire-rimmed glasses and has a white mustache. I think he feels cool having me follow him around and ask a million questions. He is very patient with me, a good teacher, and loves to tell everyone “this is my assistant. She is from America.”

Leprosy outpatient is unlike anything I’ve ever experienced of medicine in the states. The patients shuffle in and produce pressure ulcers ranging from the size of a quarter to the size of my fist. Most of them are kind of green and oozy (ack! gangrene!), while others are dry and resemble holes. The ulcers and infections are not painful. In fact, the lack of feeling caused by the nerve damage is really the reason they get so many ulcers to begin with (but if you read “the crash course” post about leprosy, you already knew that).

Dr. B. showed me how to properly palpate the ulnar (near the elbow) and common peroneal (near the knee) nerves to see if they were thickened. He also showed me how to test for anesthesia, which is the very complex process of poking the patient with a pen and asking, “can you feel that?” Many of the ulcers are treated with oral and cream antibiotics, and dressed in sterile bandages. Some need to go for debriding surgery, and those patients get admitted to the ward. I have photos of some of the more gnarly ulcers which I will not post, as they are pretty grotesque. I can certainly produce them by request if you are interested.

The nerve damage also affects the muscles. About 20% of leprosy patients experience either “claw hand” or “drop foot.” In clawing the fingers curl downward, but the palm remains open and the hand freezes in this position. A reconstructive surgery of tendon grafting can straighten the fingers and place them at an angle with the thumb to that the patient can feed his or herself, work, or even drive. In drop foot, the muscles behind the ankle contract, and the resulting position is a pointed foot. As you can imagine, this patient’s mobility is severely compromised. Reconstructive surgery, along with special boots (which are manufactured on the compound) can allow this patient to walk again. Its pretty amazing.

In some ways, working in leprosy is easier than working in HIV. While the images in leprosy are certainly more striking (deformities, ulcers etc) there is a lot that the doctors can do to help treat the patient. Some days in HIV I want to beat my head against the wall, because all we can do is treat symptoms, work against opportunistic infections, and try and prolong a patient’s life. Its certainly an uphill battle. Not to say that leprosy isn’t, but its definitely a nice change of pace.

While I was in the ward, the phone rang. A nurse popped her head into the office, and gestured that the phone was for me. Me? Who is calling me? “Hello?” I said.

“Hello” an unmistakably American voice answered! “This is Jann, I was calling to let Dr. Hrishikesh know that I am coming tomorrow at 11am to see the children.” I almost dropped the phone. I couldn’t believe how much I had missed the sound of my own language. Here I was, talking to a fellow countrywoman!

“Hi Jann” I said back, trying to sound professional, casual, and to contain my excitement. “I will let Dr. Hrishikesh know. I’m new here at Sivananda, and would like to meet up with you tomorrow as well, if that’s okay.” From there I explained my connection to SRH and found out that she is living in Hyderabad with her husband, who is here on business, and her daughter for a year. They are from Seattle. I am very excited to meet her tomorrow.

After work, I went to go play with the children–which is always the bright spot in my day. Even though we don’t speak the same language, we are communicating pretty well. Two of the girls speak English, and the rest of the children pick up on what I am saying very quickly. Its fun to learn each child’s very definitive personality. Children are children no matter where in the world they live, or background they come from. Some of the kids are leaders, some are shy. Some are competitive, while others are very creative. Each one is different than the next, but they are all really awesome.

The children were a little burnt out on “goats and tigers” today, which is reasonable because we have been playing it everyday. (Its hard to describe rules of different games, so we’ve been sticking to what we know.) Today, however, I gathered the kids around and said, “ok guys, its time for a new game.” They repeated after me, “New game.” And murmured among themselves, ” new game.” I never know if they are repeating me because they understand me, or if they are just trying to encourage me by saying whatever I am saying.

So I taught them duck-duck-goose. They are so cute, and they did really well. They haven’t quite internalized the concept of “goose” yet, so we really just played “duck, duck, DUCK!”

I think tomorrow I want to move on to freeze tag.

lots of love,

g

The HIV children: an introduction

Today was a very exciting day because Theresa took me to meet the HIV children! There are two groups of children here at SRH: the leprosy children and the HIV children. The leprosy children are all completely healthy and live here on the compound with their families. One or both of their parents is categorized as a “class II disabled” (paralyzed limb, severe disfigurement etc), and would have difficulty living a dignified life on the “outside.” The community here provides the family with housing, work, and schooling for the children. These families are welcome to live here forever, if they so desire. The leprosy kids are really fun, and are always romping around all over the place (see “Pongal”).

The HIV children, on the other hand, are pretty self contained. All of these children contracted HIV at birth, and have lots their parents to AIDS. Many of the children were brought to Sivananda straight from their parents’ (usually the mother’s) deathbeds. Some of them were pulled of the streets.

They are secluded from the leprosy children and the majority of the community because they are very susceptible to outside infection. Additionally, they are all orphans and don’t have any family that could or was willing, to take them in. They don’t get many visitors.There are 30 orphans total: 17 girls and 13 boys, but SRH recently got a grant to increase that number to 50. They are building a brand new boys home next to the existing home.

The children’s home is all inclusive. It is a large rectangle with bedrooms arranged around a the perimeter of a courtyard on the first floor. (So even if you are inside the building, you look up and see the sky.) Additionally, the first floor contains medical examining rooms where the children see their doctor, Dr. Sugena, every day. They also see a psychologist once a week, and the SRH dentist once each month. They have three women who care for them, and a teacher. All of the caretakers are also HIV positive patients.

The second floor contains the kitchen, the eating space, a recreation area and the classroom. The children that are below 4th grade are taught by a teacher on the compound. Above 4th grade the children go to public school. One of the girls, who is 15, will be starting college in the fall (you start college after the completion of 10th grade in India). Each child has a school uniform, a set of play clothes, a set of pajamas, and a pair of shoes.

Outside the building the children have their own play area with two swings, a slide, and one of those merry-go-rounds that makes me a little nauseous.

When I got to the home, all of the children ran out of their rooms and stared at me, whispering quietly in Telugu. I stared back, taking in the gravity of their little lives. Most of them are pretty young. The youngest is 4, the oldest girl as I mentioned is 15 and the age distribution is pretty stable between those two ages. It was quiet for a minute until one brave girl stepped forward and said, “name?”

I introduced myself, “gina!”

“Thanmy” she answered.

All of the children chorused “Hello gina” and I said,

“Hey, do you guys like games?”

We played goats and tigers, which is a game the leprosy children taught me. Its basically like playing tag, except if you are a goat, and get tagged by a tiger, you have officially been eaten—and you are out. The game goes on until the last goat standing becomes the next round’s tiger. Its really convenient to play inside the building because there are clear boundaries in the courtyard, and everyone plays together really well. I can’t remember the last time I had so much fun (…probably Pongal).

These children are absolutely amazing. I am so excited for all my new little friends.

AIDS, TB and Leprosy: a crash course

Ok, so for those of you who are physiologically, epidemiologically, or clinically inclined– please cut me some slack on this. For the rest of you, this is just a crash course in the basics (very, very basic basics) of HIV and AIDS, and also a little on leprosy just to provide some context about what I am doing. Some of you guys have emailed me questions concerning the diseases, concerning my potential for contracting the diseases, and what exactly I am doing from 9-4, so maybe I can clear some stuff up? Bear with me on this.

So AIDS (acquired immune deficiency syndrome) is caused by the virus HIV (human immunodeficiency virus) which belongs to a family of viruses called “Retroviruses.” Most living things transcribe DNA into RNA and then translate RNA into proteins. Retroviruses, however, are bizarre little antigens because they transcribe their RNA into DNA, which is backwards (hence the name, “retro” virus). Interestingly enough, at SRH we refer to our patients as having “retro-virus disease” or RVDs, since there is such a terrible social stigma associated with the term “AIDS.”

Anyhow, this backwards transcription is accomplished by a specific protein called reverse transcriptase. Reverse transcriptase has a big job. It has to transcribe RNA into DNA and then that DNA is inserted into the host cell’s DNA, which is then transcribed into RNA (again) by the host cell’s machinery. This is then used as the instructions to made HIV proteins. Reverse transcriptase is prone to error though, and makes lots of mistakes. And as I’m sure you can guess, mistakes in genetics often result in mutants! Some of these mutations just happen to benefit the virus in the presence of certain types of drugs (drug resistant strains).

So what we do to prevent the rise of drug resistant strains, is to treat patients with multi-drug therapy. This way, the virus is getting killed on lots of different fronts. Its really important that the patients follow the drug regimen to prevent the emergence of drug resistant strains (which, since none of the ART centers in Andhra Pradesh can supply any kind of second line ART, a first line resistant strain would be really really bad).

HIV specifically attacks the helper T cells of the immune system, which are an important component in the arms race of fighting off antigens (bad guys). Helper T cells do exactly what their name suggests: they help. They help macrophages eat up antigens, they help B cells get activated so that they can produce antibodies, they even help activate complement which is a system of proteins that kills infected cells. Helper T cells work in many ways throughout the entire immune system, so without them, a patient is immuno-compromised and their body struggles to fight off infection. Another name (a more technical name) for Helper T cells is “CD4 cells.”  Our patients have to get CD4 counts, which is an important test that helps the doctors (and hopeful medical students from America who follow the doctors around) to understand how the patient’s body is holding up against the virus. When a patient infected with HIV has a CD4 count less than 200 cells (per microliter of blood) they officially have AIDS. This point is an important marker for medication. The children, however, start medication when their CD4 drops below 500.

As the CD4 count drops, the immune system becomes weaker and weaker. As a result, patients get lots of opportunistic infections. Opportunistic infections are caused by other bacteria or antigens (not HIV) who are taking advantage of the weakened patient. The most common opportunistic infection in patients with HIV that we see at Sivananda (and the most common globally) is tuberculosis (this is often referred to as HIV/TB co-infection). Generally speaking, TB is not a highly infectious disease, and in a healthy individual it is pretty difficult to contract.  Additionally, patients receiving treatment are not infectious (therefore, it is possible that I could contract TB, but it is really, really unlikely that I would, so please don’t worry about that either). The bacterium that causes TB, Mycobacterium tuberculosis, is very very slow growing, and oftentimes (95% of the time in imuuno-competent individuals) the immune system kills it before it can get fully established.

Commonly, TB is found in the lungs. This if for a few reasons, one: the immune system generally tries to stay out of the lungs, because I mean, the less stuff in there the better. Two: TB is spread through droplets, so it is inhaled, and then sets up infection in the lungs, because that’s where it lands. However, since HIV patients have such weak immune systems, the TB has some pretty free range. It can a little haywire and sets up all over the place! This is called extra-pulmonary TB. I’ve seen X-rays and ultrasounds of patients with TB in their kidneys, in their brains, and even in their pancreas. From a social standpoint, its really sad and terrible, but from a clinical standpoint it is very interesting. Sure enough, India is the TB capital of the world. Andhra Pradesh has the highest percent of TB in the country, and Hyderabad is the capital of A.P. So I mean really, if you want to see some serious TB—this is the place to be. TB is curable, and is treated with multi-drug therapy to prevent drug resistant strains (same as with HIV). Drug resistant strains of TB do exist, and it has occasionally been the cause of some pretty scary international panic.

Dr. Yadavalli (my supervisor in Ohio) and his team of students (myself included) have been working in the HIV clinic creating a computer database of the patient records and collect the data from usable patient cases. I have zero contact with serum or blood, so do not, under any circumstances, worry yourself about me contracting HIV. Our goal is to write and publish a paper about the types of opportunistic infections that we are seeing, the CD4 counts (along with some other lab data such as lymphocyte count and hemoglobin) and the patient demographics. This data is important on a global perspective, because it helps keep the medical community abreast to what it is happening in the developing world, and the relationship between the struggles and resources available. Millions of doctors and scientists are working very hard to bring down the cost of HIV tests and treatment, and to increase the efficiency. Additionally, a publication is important source of PR for Sivananda.

Feeling overwhelmed? You’re doing great! Ok, so let’s switch gears to leprosy.

Leprosy is caused by bacteria, Mycobacterium leprae, (same family as TB actually), and like Mycobacterium tuberculosis, it grows very slowly. In fact, it is the slowest growing of all known bacteria. Because of this leprosy is 1. not very contagious and 2. very curable.

Leprosy is a disease that primarily affects the nerves. The skin lesions, infections, muscle atrophy etc are all complications which arise from the damaged nerves. The bacterium prefers cooler temperatures, so it usually localizes away from core body temperatures in the limbs and the face. Therefore we see most of the damage in the hands and the feet. The bacteria settle in the Schwann cells and causes the nerve to demyelinate. The nerve becomes very thick, and the doctors can physically feel it. The thickening nerve results in a lack of feeling to the given area.

In the case of the ulnar nerve (take a second to bend your elbow. Now feel between the two little bumps at the end of your funny bone. If you don’t feel a thick nerve bulging a little that is sore when you push on it, there’s a good chance you don’t have leprosy) the thickening results in “clawing” of the hands. The fingers bend completely at the top two knuckles, so the palm is open, but the fingers are rolled down. The hand freezes in this position. At SRH, the doctors perform reconstructive surgery to straighten the fingers out and angle them opposite of the thumb. They are still frozen in this position, but at least the patient can pick things up and use their hands a little bit, as opposed to the claw hand, with is pretty useless.

The WHO (and Sivananda) classify leprosy into two types: PB (pauci-bacillary) and MB (multi-bacillary). MB is more severe, and is characterized by more bacteria in the body, and more extensive anesthesia. Most of our patients are MB. Patients are treated with multi-drug therapy: two drugs for 6 months for patients with PB, and three drugs for 12 months for patients with MB. The WHO provides free medicine to any patient in the world with leprosy. Once on the treatment, the bacteria in the patient’s body gets killed off very effectively, and no new nerve damage occurs. The problem is, any previous damage is permanent. Additionally, new complications are always arising from old damage. We have many patients each day who get some really heinous ulcers. The patients injure themselves, but don’t know it (no feeling) and then the injury becomes infected. The ulcers, lesions, gangrene etc. that result from these injuries are where leprosy gets the stigma of uncleanliness.

Globally, leprosy is really on the decline. India and Brazil make up over 80% of all leprosy cases in the world, and with available treatment, people are cured left and right. It’s a great success story, but its really important to recognize that patients who are “cured” of the disease still live a long life of complications, disfigurement, and are socially stigmatized. SRH does a really good job of treating the whole patient, not just Mycobacterium leprae. Patients who are too disfigured to function outside live here. They have dignified work, food, clothing and a welcoming community. There are weaving factories on campus where linens and bandages are made of the hospital and the community. Rehabilitated patients can receive training to do LPN work, secretarial work, or even learn a trade. Additionally, my night watchman is a cured leprosy patient. It really is remarkable to live and work in such an interesting community.

So there’s a little bit on HIV/AIDS and leprosy (and some TB thrown in to boot!) If you’re interested in further reading try:

http://www.who.int/mediacentre/factsheets/fs101/en/

www.apsacs.org

and of course:

www.sivanandarehab.org

The Children

I just had my first encounter with the children. They were the “leprosy children” (as opposed to the “HIV children”) which just means that their parents have significant disabilities due to leprosy and live here on the compound. They are completely healthy, fun loving kids. They live here with their families, go to school here, and love to romp around all over the place. They are so cute. I just wanted to snap picture after picture of them, scoop them up and play all afternoon.

I had a long day of staring at record books, and seeing lots of patients with discouraging cases. I was staying in the office sending emails to my family (no internet in my room yet), when I heard a sound that’s joyful in all languages, peals of laughter. I shut down the computer and ran outside to find about 20 children ages 4 to about 12, standing behind the kitchen. I went over and said hello and they all stared at me—some bravely calling out “Hi!” I asked, “what are you guys doing?” blank stares. Then, their teacher (a young man who can’t be older than 25) told me that they were looking for a kite. So I said, okay- I’ll help you look. But they just kind of stared at me.

We stood there awkwardly for about 4 seconds and I said, “soo do you guys want to play a game?” and some of them shouted back “game!” I picked up a stone and drew a hopscotch course in the dirt, and the children eagerly followed. One of the little girls about 10 I’d guess picked up my stone and drew an extra box where I had forgotten one, and we hopped along. The girls and little boys giggled. After everyone had a few turns, I gave them double thumbs up and said, “good job!” which they mimicked and repeated back to me “good job!”

I saw a boy holding a long stick so I called the two oldest boys over to hold the stick at shoulder length, and showed them how to play limbo. They were so cute—just running under the stick those first few times. Then as it started to lower we kind of lost the sense of order, but they were having a blast—laughing, jumping and screaming. After we finally found a winner at limbo, I got really ambitious and taught them how to play “down by the banks” which was one of my favorite recess games when I was little. Except I wanted to use a telgulu song, but no one volunteered one (its possible they didn’t know what I was asking) so I sang the song in English every time. They caught on really quickly and every time we got to “SPLAT!” they all laughed and rejoined the circle. At the end, the winner was the little boy holding my left hand, who could barely get the hand slapping down to begin with. I picked him up, and said “winner!” and all the kids cheered.

When that was done and over, after an hour or so, their teacher said it was time to go in. There was a chorus of “bye!” and they walked down the path following their supervisor. I want to find some kites for Wednesday, which is Telugu new year, and the thing to do, apparently, is to fly kites.

It was really really fun.