Down the Rabbit Hole: epilepsy in Tanzania

Epilepsy.  The Swahili word is kifaafaa, origins possibly from the verb “kufaa” meaning “to die”.  Although overshadowed by diseases such as AIDS, tuberculosis, and malaria, most of the same diseases and conditions present in the United States are also present in East Africa.

My interest in epilepsy in Tanzania was sparked over a pot of chocolate fondue in Arusha town.  I had met with my election buddy, founder of “Mwangaza” (www.mwangaza.com) who is working on an epilepsy initiative that will tackle multiple facets of the epilepsy problem within Tanzania over a 2 year time span.

Although the exact prevalence of epilepsy is unknown in Tanzania, it is estimated to be higher than that of western countries, ranging from 5 to 75 cases per 1000 patients (Foresgren, Winkler).  There are many theories, including increased incidences of diseases such as neurocystocercosis, cerebral malaria, and meningitis, head trauma, or toxins.  While there is a growing body of evidence regarding prevalence of epilepsy in sub-Saharan Africa, we have not even begun to go down the rabbit hole.

Cerebral Malaria

Of the four species of plasmodium known to cause malaria, Plasmodium falciparum causes the most severe illness.  Although many cases will remain as simple malaria, complicated malaria can cause acute renal failure, acute respiratory distress syndrome, changes in blood homeostatis, and cerebral malaria.  Cerebral malaria carries a drastically increased risk of mortality and is often characterized by seizures.

As diseased erythrocytes flow through the vasculature of the brain, they begin to stick to the endothelium and disrupt blood flow.  Cytokines are released to fight the disease, but, also do harm to the brain tissue.  Despite treatment, neurological damage may persist.  It is hypothesized that CNS infections, such as cerebral malaria and meningitis, may play a role in epileptigenesis for some patients living with epilepsy in sub-Saharan Africa.

While many questions remain to be answered, undoubtably many patients would benefit from rapid malaria treatment to reduce the risk of progression to complicated malaria.

Neurocysticerosis

Pigs are filthy animals.  Cysticercosis results from infection by Taenia solium, a parasitic worm that is acquired from undercooked pig meat.  Infection with the adult worm causes taeniosis, tapeworm infection.  The worm grows and begins to shed eggs which are released into the host’s feces.

The eggs can then be potentially ingested by other pigs, other humans, or auto-infect the original host.  These hatched worms will never leave the larval stage, but are deposited into the host’s tissue where they develop into cysts capable of causing an immune response.  Inflammation from the host’s immune system attacking the parasite results in the clinical symptoms of cysticercosis.  Eventually the legion will calcify and the inflammation will disappear.

Neurocysticercosis results when the parasite has penetrated the blood brain barrier and forms lesions in the brain tissue.  It is possible that the lesions will be asymptomatic, but there is a growing body of evidence to support high incidences of epilepsy or recurrent seizures in patients with neurocysticercosis (NCC), especially during the phase of intense inflammation.

Without access to neuroimaging technology, it is important for physicians in areas of endemic NCC to be able to identify symptoms.  Cysticercosis can be treated with anti-parasitic medication, such as albendazole and praziquantel, and steroids.  Additionally, anti-epileptic medications are helpful in symptomatically managing the disease.

Neurocysticercosis is the leading cause of adult onset epilepsy in the world, and it is completely preventable.  Increased education on proper hand-washing techniques and the dangers of ingesting undercooked pig meat could significantly reduce the prevalence of seizures and epilepsy in sub-Saharan Africa.

The majority of patients living with epilepsy in sub-Saharan Africa are untreated.  WHO estimates that over 80% of patients with epilepsy in Africa do not receive any treatment.  Untreated epilepsy leads to progressive brain damage, and patients are at risk of physical harm when they seize.  Major obstacles to successfully manage patients with epilepsy include a lack of resources, lack of experience in treating epilepsy among health care professionals, a lack of understanding of the disease for patients living with epilepsy, and cultural barriers. 

Resources

A simple lack of resource is the most obvious reason for the treatment gap.  The only medications I was aware of that were being used to treat epilepsy in Tanzania are phenobarbital, phenytoin, and carbamazepine.  Valproic acid seems to also be a common treatment in third world countries.

In Tanzania, phenobarbital is the most frequently used medication.  It is far from being first line treatment of epilepsy in the United States for the simple reason that many patients taking it turn into a sort of zombie.  It is very difficult, if not impossible, to be high functioning while taking large daily doses of phenobarb to control seizures.  However, it is very effective in controlling seizures and patients can safely take it without needing blood draws.

There is a shortage of neurologists in Tanzania, and with this, there is less understanding in how to effectively manage the disease and manage the medications.  Many health care facilities may not have labs with the capacity to monitor serum levels of carbamazepine or phenytoin, essential to avoid blood dyscrasias and seizures that can result from high phenytoin levels.  Additionally, many patients with epilepsy live in very rural areas, where seeking any kind of medical care is a challenge let alone getting to a larger facility with the capacity to determine serum drug levels.

Carbamazepine is available in Tanzania, but it is only available in larger urban areas.  A challenge for my friend, that is developing the epilepsy initiative, is not only to find patients and get them started on an antiepileptic medication, but also to keep them on that medication.  As she goes out into the villages, she not only has to provide medication on this visit, but ensure that systems are in place for the patient to continue their therapy.  The wider availability of phenobarbital again makes it a more desirable choice for this reason.

Culture

Epilepsy is known as “kifaafaa” in Swahili, which may be translated as “deathdeath”.  The disease is not understood well by the majority of the population and is surrounded by a number of superstitions.  Learning about these was one of the most interesting aspects of the disease; to treat the epileptics of East Africa, these beliefs must also be confronted.

Many people believe that epileptics have been cursed or that they are being possessed.  Under this belief, a person that is seizing is less likely to be helped, even if they fall into the cooking fire.  Many people that have been living with epilepsy for a long time have been badly burned.  Poorly controlled epilepsy also results in decreased brain function, as a result from a lack of oxygen delivered to the brain during seizures.  Epileptics are the victims of social stigma, increased physical risk, and risk of neurological damage. 

Another friend of mine was working to set up a homeless shelter for women in Usa River Village.  He wandered the streets with Ibra, a former student, as an interpreter and met women in the worst situations of life and listened to their stories.  One woman who was of great interest to me, was covered in burns.  She told him she had a “fainting problem”.  She also exhibited neurological damage; she was not really all there.  Her strangeness drew neighbors out of their homes, who in turn laughed at her.  She had virtually no support system, and neither she nor her neighbors understood that her condition could be treated with medication.

Given these stories, my heart goes out to Mwangaza.  I have only begun to go down the rabbit hole, but Mwangaza is already in action, setting out to tackle a disease state that is not only misunderstood by the general population, but also has little scientific research behind the prevalence, origins, and treatment in this geographical area.  If given the opportunity to go back and make myself useful to Mwangaza’s initiative, I would do so in heartbeat.  

References:

Winkler AS et al.  Prevalence, incidence, and clinical characteristics of epilepsy- a community based door-to-door study in northern Tanzania.  Epilepsia 2009; 50(10):2310-2313.

Mbuba CK et al.  The epilepsy treatment gap in developing countries: a systematic review of the magnitude, causes, and intervention strategies.  Epilepsia 2008; 49(9):1491-1503.

Ngoungou EB et al.  Cerebral malaria and epilepsy.  Epilepsia 2008; 49(Suppl. 6): 29-24.

Zafar MJ. Neurocysticercosis.  eMedicine Medscape 2009.  Taken from http://emedicine.medscape.com/article/1168656-overview  on 1 November 2010.

Winkler AS et al.  Epilepsy and neurocysticercosis in sub-Saharan Africa.  Wien Klin Wochenschr 2009; 121(Suppl. 3): 3-12.

Quet F et al.  Meta-analysis of the association between cysticercosis and epilepsy in Africa.  Epilepsia 2010; 51(5):830-837.

An Indian Wedding

"It's not what you are that counts.  It's what they think you are."
-Andy Warhol

I learned the first time I traveled in Tanzania in 2008 that if a man asks you if you are married, you say yes.  It was all too easy to meet handsome young bachelors in East Africa, but easiest to avoid the Borat question- so when we have the sexy time?; and yes, I have been asked this multiple times by men I had been speaking with for more than 5 minutes- if I said that I had left the old ball and chain at home- and even better if I said the hubby was an Arab.

I encountered a similar problem in India, but in general, men were more aggressive in trying to convince me to marry them then just to have sex with them.  I suppose that in addition to sleeping with them, they also hoped that I would fold their laundry for the rest of my life.  Aim high.

I would make up all sorts of stories.  Usually whichever male friend I had been thinking about most recently became the victim of my marriage fantasies.  I would give us all different types of jobs, talk about our plans for children or no children, and invent the histories of our relationship.  I would invent the perfect husband.  On any given day, he could be of any nationality, hold any job or position, and be a perfect scramble of all the best traits I have discovered in the men I know.

My imaginary marital life really blossomed in Pushkar, the first place I went after leaving Ajmer.

After checking into a guest house, I went to see the lake.  Pushkar is a holy city.  It is the one of two places in India with a temple to Brahma.  It is said that Brahma dropped a lotus flower to earth, and where it landed, became Pushkar.  The tourist pocket book is also highly revered.

I was awestruck by the beauty of the the lake and approached the ghat, then led down to the water's edge by holy men for my puja, a sort of Hindu baptism.  I informed the holy man of my family dynamics, instinctively saying that I was married.

Lonely Planet had already warned me to ask a price before starting.

No no.  This is holy.  We do not talk about money.

After I had poured pond juice over my head, I was asked to give money as the blessing for the health and wellness of my family.

I will give 100 rupees.

No no no.  Not even the poorest of peoples gives this amount.  Ok 100 rupees each family member.  This is good price.

I will give 100 rupees.

Imagine my shame a month later, when I returned home, and had to tell the friend  I had named as my life-partner that I had only given 20 rupees for his health and wellness... but what a bargain!

I moved on from Pushkar to Jodhpur, the blue city.  Jodhpur is my favorite place that I stayed in India.  I stayed in the Hare Krishna guest house, which was a dream in itself.  Which undoubtedly influenced my opinion of Jodhpur for the better.

I was there two nights.  The second night was Christmas.  Both nights there was a wedding celebration for our neighbor held next door.  Christmas night was the actual wedding ceremony.

Hearing music, we ran downstairs to see a terrified groom on a horse surrounded by dancing family members and friends.  The wedding was to be held 2 kilometers away.

Manou, a member of the family that ran the guest house, was going and asked who wanted a ride over on his motorcycle.  I can never turn a free motorcycle ride down.  I got on with a 30 year old veteran traveler from Belgium and we were whisked away.

Unlike American weddings, food is served to the guests buffet style (Indians love a good buffet) before the bride and groom even enter for the ceremony.  Half of the guests were dressed in the finest saris and the other half wore jeans and a sweatshirt.  The Belgian woman and I were making some small talk with guests and children and were led backstage to meet the bride by the children.

She was absolutely beautiful.  She was 24 years old, covered in henna, adorned with heavy gold jewelery and jewels and wearing a heavy looking bedazzled red sari.  She spoke good English.  She told us she was nervous.  She had never met her future husband.  We assured her that he was very good looking.

He has kind eyes, I offered.

We took pictures with her and wished her luck.  Back outside, Manou was eager to go.  He had finished eating and it was cold.  We waited until the bride and groom came out to the stage for the ceremony then left.  They are not supposed to look at each other until the wedding night, but they stole glances of each other from the corners of their eyes.  Manou told us that he was married a year ago.  He showed us pictures of him with his wife.  They looked happier together than I could ever hope to be.

She is beauuuutiful! You are very lucky.  We gushed.

She is lucky.  He corrected us.

He explained,
In America, you love first, then live together.  In India, the opposite- first you live together, then you love each other.

Its a leap of faith.

Experiencing the wedding in Jodhpur wasn't the last time in India that I would consider what I wanted from relationships in my life.  However, I'll save my marriage proposal in Khajuraho for another entry.

Women

The black dress seemed excessively revealing- because it was astonishing to discover that the lines of her shoulder were fragile and beautiful, and that the diamond band on the wrist of her naked arm gave her the most feminine of all aspects: the look of being chained.

-- Ayn Rand, Atlas Shrugged

Vatsalya's clinic in Jaipur dealt exclusively with truck drivers.  Since the 1990s, HIV awareness in India has been on the rise, but it is still a somewhat taboo topic.  A man and woman should remain virgin until their wedding night, when they are bound to love and honor their partner that they have most likely met for the first time this night.  It seems crazy, but so is the American divorce rate.

Long distance truck drivers leave their homes for days at a time to deliver goods across India, leaving their wives and families behind.

"These men have needs," Doctor Rahul explained.

As a result, there is a lot of prostitution near the rest stops.  The men bring home HIV, gonorrhea, and chlamydia to their wives who often feel to ashamed to tell their husband of their ailment or to seek medical help.  Vatsalya's aim is to fulfill the need for treatment and education in this population.

One day at a extension clinic, one of the male nurses invited us to see a female sex worker.  As we walked out toward the main road, he explained to me:

Female sex worker has four qualities
1: She has other job.  She shines the shoes or sells the things in her area of prostitution.
2: Her husband he travels.
3: She is very wealthy so she can pay the men for sex.
4: She likes the sex.

Wait.  I'm sorry I misunderstood.  You mean to say that her husband left her and that she is so impoverished the only thing left she has to sell is her body, correct?

No.  Female sex worker is very wealthy.  Unless she pays the men they do not wish to cheat on the wife.

I really hope that he was kidding.  I also know that he was completely serious in telling me this.

We found the women sitting on the side of the road in front of their shoe shining stations.  Some were probably female sex workers.  Maybe others weren't.  The nurse said that a man would approach and signal to them.  If they responded to the signal, they were a sex worker and they would work out their deal.  I decided that I needed to go to Ajmer to see the project dealing with female sex workers.  I needed a more complete picture of the problems.

Ajmer.

I woke up early to get there as soon as possible, in hopes of starting work that day.  I arrived and the coordinator was away for a meeting.  Tomorrow you will start.  So I spent the day exploring.

The next day I got up, refreshed, eager to start.  I met the coordinator when he came in the night before and we had arranged for me to shadow some of the educators to female sex worker hot spots.  Again it did not work out to go.  I made the decision to leave that day for Pushkar and start traveling.

It was interesting to have that little glimpse of the project in Ajmer.  Unlike the Jaipur project, it was solely an awareness and condom use program.  Women were not tested for sexually transmitted infections, although they were often taken to sites where they could be tested.  Women who were already HIV positive did not fall into the targeted patient population.  These women were taken care of by other organizations or by the government run HIV clinics.

Education goes a long way.  Although many women knew that sex with a condom was safe sex, men would often offer to pay extra to have sex without one.  Vatsalya's projects were so interesting because they educated both sides of the problem.  Educating sex workers and educating their clientele were equally important in reducing the spread of HIV and sexually transmitted infections.  Prevention is the best cure.