Thursday, March 15, 2018 – Dinner with Daniel Tewa and his family…

Standard

It had begun to rain in the early morning hours well before 5am as basically everyone had heard it in his or her slumber. It remained heavy and relentless well through the morning hours so the walk to clinic was a wet and muddy one that required full rain gear and mud boots and, despite this, kept only half of the water and dirt out it seems. When it rains like this, it is difficult for most patients to make it to clinic as the roads become very treacherous and walking, the main mode of transportation for patients we see here isn’t feasible. Thursday mornings are now reserved for the Tanzanian doctors to give a lecture on a specific topic and this morning, Dr. Badyana was speaking about the surgical treatment of appendicitis. We had all been out late and some of us later than others, but Susanna, Susan and Mindy were determined to make his lecture on time, which they did, and Johannes and I were much slower to move so straggled in a bit later. Having to make a lecture at 7:30am requires a very dedicated and concerted effort, neither of which Johannes nor I had that morning.

Susan and Baraka taking a history

I knew that we had at least one patient who a friend had referred from Loliondo, a district that is accessible primarily by the Lake Natron road and is north of here near the Kenyan border. It is a very remote area with few resources and I have visited there once before a few years ago. It is very dusty and dry, but absolutely gorgeous in that very rugged sense and totally worth visiting if you were ever to have a chance. The Lake Natron road travels through some valleys and by the foot of Ol Doinyo Lengai, or the Mountain of God, and is a sacred mountain to the Maasai. It also erupted in the not too distant past, so still has Lava flows that drape over the top of the mountain and radiate downward from the cone traveling to the base of the mountain. There are places on the road where you are driving over crazy rock formations, often with very little shoulder to them so there is little room for error. It is not exactly rock hopping, but it comes very close and is certainly not for the faint hearted.

Susanna examining a patient with Emmauel

We had some very interesting and diverse patients this day, most of which were quite determined considering the long rains of the morning and the difficulty in getting here. Susanna and Johannes evaluated a young woman who was having episodes of loss of consciousness that had previously been diagnosed as seizures, but clearly were not. The episodes also raised concern for PNEE, or paroxysmal non-epileptic events, that used to be referred to as pseudoseizures and a type of conversion disorder and usually not malingering as was often thought to be the case in the past. These events are obviously not treated with anti-epileptic drugs, but there is one caveat; a significant percentage of patients with PNEE also have underlying epilepsy that complicates the issue of diagnosis. At home, we’re often admitting these patients to the epilepsy monitoring unit, or EMU, which is an inpatient unit where the patients remain on continuous EEG monitoring with the hope of capturing an event. It goes without saying that there is nothing similar to an EMU here or probably anywhere in East Africa. Having had the EEG machine here back in 2015 was such an amazing resource, but, alas, it is no longer operational and has yet to be replaced. In the end, though, this young woman’s events were also concerning for syncope, or loss of consciousness that is related to perfusion of the brain due to a drop in blood flow, so we decided to get both an EKG and echocardiogram on her to rule out this possibility, both of which were normal.

Everyone getting into the action

A young child that Susan say this morning had a very interesting combination of developmental delay and epilepsy that fit the phenotype of GEFS+, or generalized epilepsy with febrile seizures plus, that is a genetic disorder and requires specific medications to be avoided, that are unfortunately nearly every medication we have available here and are the medications that are the least expensive. Perhaps the most common medication we are using in the US currently, levetiracetam, is the most expensive anti-epileptic here and is nearly impossible to use due to that fact. The reason it is used some commonly at home is because of its versatility in the seizure types it can treat along with the low likelihood for interactions and side effects. The least expensive medications here are the older AEDs that are being used less and less in the US. Phenobarbital, which is still the first line AED listed by the WHO, has many, many side effects, especially for developing children and is really something we try to get most patients off of when we see them. It is also known to make patients with generalized epilepsy worse rather than better so that is another significant issue. In the short time that we were doing EEGs here, we found a great number of patients with primary generalized epilepsy in whom you would not want to start phenobarbital.

Susanna checking a patient’s postural stability

There was a family who came from a great distance to be seen today by Frank in the general clinic and he had asked us to evaluate an older woman among them who he noticed a tremor in. The woman clearly had a significant resting tremor that was not disabling and Susanna also found some subtle abnormalities of tone suggestive of possible Parkinson’s disease. The findings were subtle, though, and we didn’t feel that she required carbidopa/levodopa as this medication provides only symptomatic relief and primarily related to rigidity or increased tone, which she really didn’t have. The woman also had an abnormal gait that turned out to be from a monoparesis, which was the result of childhood poliomyelitis affecting only leg. None of the residents had actually ever seen a patient with a dramatic monoparesis and wasting of a limb as the result of polio.

Johannes and Baraka evaluating a patient

One of the families seen today had a young boy with severe autism and developmental delay, but also with episodes that bore some concern for epileptic events. They really hadn’t found any good support systems for their child as they do not live close to other relatives and schools for this type of problem were far too costly and would be prohibitive. Later, we were given the name and number of a women living in Moshi, near Mt. Kilimanjaro, and who could possibly help them significantly or at least know someplace that they could go to for that type of rehab that might be closer to home for them.

Mindy and Susanna evaluating a patient with Baraka’s help

With the long rains of the morning, the patient volume was only moderate and we were able to finish up clinic a bit early, which was good as we had plans to visit Daniel Tewa and his family tonight for dinner. I’ve written about Daniel so many times on this blog that I don’t want to bore those of you who have read about him before, but our visits with him are so significant that I can’t help but expound on it for those who are new to the blog. I fist met Daniel Tewa when I was here in 2009 with my children and we had asked to do a bit of volunteering as a part of our safari. We spent that time in Karatu (which is when I was introduced to FAME and Dr. Frank, and, as they say, the rest is history) working at the Ayalabe Primary School helping to repaint the school buildings. Daniel, being an elder in the village, had been asked by Thomson Safari to be a liaison for us, so we spent three days with him working on the school. There was an immediate friendship created and when I came back the following year to work at FAME, I had contacted Daniel to reconnect and it was almost as if I had never been gone.

Daniel helping Susanna model an Iraqw wedding skirt

He invited me for dinner that trip, and I have gone to his home to have dinner with his family ever since, and now bring my residents to meet them. It is a wonderful friendship that we have and Daniel has been so gracious to open his home to us as this is an amazing experience for the residents who accompany me making this not only a medical mission, but also a cultural experience so we get to know more about the people we’re seeing every day to who we are providing treatment. That is such a very important part of global health as you much have some understanding of the people here and their lives to be able to provide them care. Though the basic principles of medicine may be the same wherever you are, your ability to apply them and to provide patients with the information they require to make those important necessary decisions relies heavily on that understanding.

Dinner at Isabella’s

We sat out in front of Daniel’s house as I had nine years ago when we first met and drank the wonderful African coffee they serve here, in which the coffee is boiled with fresh whole milk. It is mostly milk, but it is rich and tasty for even those not used to drinking coffee. We also had avocados from their garden that we sliced in half and ate with a spoon as they do here. All of this while discussing everything from politics, both US and Tanzanian, to the intricacies of the Iraqw culture and their history. It was dark, but we managed to spend time in Daniel’s authentic Iraqw house that he built on his property back in the 1990s as a reminder of the type of home in which he grew up. It is underground, which was for protection against the Maasai whom they were always battling with, and provided shelter to an entire family along with all of their animals so they would not be stolen in the night. The Maasai and the Iraqw signed a treaty finally in 1986 ending their conflicts that were quite real prior to that.

Susan and Baraka evaluating a young patient

When it was time for dinner, we all walked down the road to his daughter, Isabella’s home where we would eat as the group has become larger than can be served in the small living room of Daniel’s Bantu home. It was a wonderful dinner that was served to us by Isabella and two of Daniel’s neighbors who had come to meet us. Daniel has always reminded us of what a true honor it is for his family to serve us in this way, and I have always reminded him of how grateful we are to his family for providing us this friendship. Everyone there, whether American or Tanzanian, was truly moved by the experience and I knew there would be a lasting impression on everyone. We drove home through Karatu, which is always a challenge at night without streetlights and with every headlamp misaligned and seemingly pointing right into your eyes, as the faint shapes of people, and sometimes animals, are dodging in front of you to cross the street. Up the bumpy and muddy road to FAME and we are home, everyone happy to have had the wonderful experience of dinner with Daniel Tewa and his family.

 

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