As many of you know, mobile clinics in general have been a thing at FAME since the very beginning. When I first came to FAME in 2010, they had been providing medical services on a monthly basis (weather and roads permitting) to the very remote Lake Eyasi region of the Karatu district that is about five hours away from Karatu and an area where there were literally no medical services at the time. FAME had a 3-year grant from a Dutch non-profit, Malaria No More, to provide not only the medical services, but also to provide educational services on malaria and sexually transmitted diseases to the Datoga and the Hadza, both tribes living in that region and the latter being significant as the last hunter/gatherers in Tanzania and essentially a dying tribe.
My introduction to the Hadza, or Hadzabe, was through this clinic where a team of doctors, nurses, lab techs and support staff would stay for a week in the bush and have daily clinics treating patients that would often travel days to reach us. We would spend the day working hard and the evenings relaxing around camp sharing stories and getting to know one another. It also gave me a chance to spend time with some of the young boys from the Hadza tribe and go out hunting with them. They still use bows and arrows to catch their prey, though was mostly birds and small mammals by that time as the big game had mostly disappeared due to competition with the Datoga cattle as they are pastoralists and this was creating a significant issue as far as how the two tribes could live in the same region together. The Hadza are essentially the bushman of Tanzania, small in stature similar to other bushman tribes of Africa, and they also spoke click language which is a very unique and nearly extinct form of language found in various unconnected areas of the world. Unfortunately, due to the tremendous pressures placed upon them by modern society, the tribe is contracting and there are probably less than 1500 remaining with little hope for their long term future.
Returning from one of these large mobile clinics in 2011, I was asked by Paula Gremely, a remarkable social worker from the US who had created her own non-profit providing primarily orthopedic rehab solutions for patients here, if I would be interested in traveling with her to a few of the more remote villages in the Karatu district to provide neurologic services. She and her colleague, Amiri, would provide the transportation and I would bring a clinical officer and nurse from FAME to help with translation and medications, respectively. It took me about one second to say yes as I realized that this was really what I was here for, not only to train the doctors and nurses about evaluating and treating neurologic disease, but also to educate the community that neurologic disorders were very often treatable and especially when it came to epilepsy, which is seen here with such a high prevalence.
Our very first neurology mobile clinic, or mini-mobile clinic as I had referred to them early on to distinguish them campaign like clinic we were doing at Lake Eyasi, was held in Kambi ya Simba, or Lion’s Camp. This village is in the Mbulumbulu region of the Karatu district, an area that is incredibly beautiful and rich in farming, and is inhabited mostly by the Iraqw tribe. When I first came to Kambi ya Simba, there was no health dispensary here, or if there was, it wasn’t very obvious as we held our clinic completely outdoors with the patients all sitting on a log waiting to be seen and I had to initially ask that they remain seated as everyone wanted to participate in each other’s visits making privacy an issue. I sat outside with Dr. Ringo, the clinical officer accompanying me at the time, seeing neurology patients under the open sky with just a table and chairs, my stethoscope, reflex hammer, tuning fork and safety pins. I was in heaven as I could have only dreamed of this scenario.
Now, eleven years later, I am traveling to the very same village, though it now has a very modern dispensary built by the government and visited by the president to inaugurate it. And I am driving my own Land Rover with a team of neurology residents, clinical officers, nurses and my own social worker from FAME for a clinic that was announced weeks ago to the community. I have returned to Kambi ya Simba every six months since 2011 to provide these very same services and now have patients that return each time to see us and pick up their medications. And we continue to see new patients that have heard about our clinic and come to see us with untreated or undiagnosed neurologic illness that may only require simple medications that will change someone’s life.
In the Mbulumbulu region, in addition to Kambi ya Simba, we had previously attended Upper Kitete for a number of years, but found that there was less of a need to have two clinics in this area where our attention could be place in other areas of need. We have always gone to Rift Valley Children’s Village, where we’ll be tomorrow and I can talk about our history with that institution at that time, and now we are also providing services in Mang’ola, a region next to Lake Eyasi, though several hours closer than where we used to go with the bigger mobile clinics. We will travel to Mang’ola in several weeks with the second team of neurology residents who will be arriving in two weeks.
As I mentioned, the Mbulumbulu region is spectacularly beautiful and the 45 minute drive there, leaving the tarmac at the village of Rhotia, leads through fertile farmlands growing crops of all types. The route travels in and out of valleys along the way where farmers and their families are tending to their fields in that constant cycle of planting and harvesting depending on which season they’re in. Private Land Rovers loaded to the brim and then some with people and supplies vie the road along with the boda bodas (motorcycles) that serve as both taxis (most often with two passengers plus the driver) and supply vehicles, often overloaded with bags of grain or cases of soft drinks stacked precariously on the back of the motorcycle. The overloaded vehicles traveling in the opposite direction can be a bit unnerving at times as they constantly sway from side to side and on a bumpy, dusty dirt road, if you can call it that, that has only one lane for both directions, driving here can be incredibly adventurous to say the least.
The Mbulumbulu region occupies the space between the Ngorongoro Conservation Area and the 2000 foot escarpment of the Great Rift Valley. It forms a triangle with the base facing Karatu and Rhotia Valley and the point at the furthest distance one can travel before the NCA runs directly into the escarpment and there is no more level ground left to farm or live on. At Upper Kitete, we used to visit the Overlook which was a point on the escarpment not far from this end point, where you sat 2000 feet above the floor of the Rift Valley with the ability to see fully up the valley towards Lake Natron and down the valley towards Lake Manyara with a 180° view and the mountains of the NCA at your back. It was quite a spectacular view and everyone thoroughly enjoyed the visit.
It took a bit to get set up for our clinic at Kambi ya Simba as the furniture needed in our exam rooms had to be carried from other areas of the dispensary – this included enough chairs and several desks while two of the rooms had beds in them that the patients could sit on and would work perfectly fine for what we needed. We didn’t have a fourth room initially, but eventually one was found a short distance away and Moira gladly manned that rather than trying to do the entire clinic one room short which would mean that the residents would have to rotate in and out which is never ideal. We had enough patients to support the four rooms and that worked much better as we ended up working through until nearly 5 pm and, though we never about when we get home, it’s not fair to the FAME staff to have them working late as they hadn’t planned for it.
At the mobile clinics like Kambi ya Simba as well as those in Mang’ola, the arrangement is the same as it is at FAME in that the patients pay 5000 TSh for the visit, any labs and a month (or sometimes more depending) of medication. As we don’t have labs available to us on mobile, this means that a patient will have to travel to FAME to get these, but that is usually not an issue. We bring all of our neurology medications with us in a large plastic tub container and they are then dispensed by our nurse after a prescription is written for internal use. If they need labs, we write this on a prescription and when the patient goes to FAME they hand in the script and the labs are done.
Probably the most interesting patient of the day was a patient that Alex saw. It was an elderly man who had been brought by his son in a vehicle as the patient had been unable to walk for several months for unclear reasons. They drove their vehicle right up to where clinic was and the patient sat in the car until he was ready to be seen and it took two men to get him out of the truck and into a wheelchair to be examined. As much as patient’s histories are typically very poor here for a number of reasons, it turns out this patient’s son was able to provide a very accurate history that included having urinary obstruction secondary to BPH diagnosed recently and having a suprapubic catheter placed due to this. In a matter of only several months, the patient had gone from being fully functional mentally and physically, to being unable to walk and having significant cognitive problems. Additionally, the patient’s son reported some abnormal movements described as being similar to myoclonic jerks and during his exam, abnormal jerking movements were noted in his hands.
Unfortunately, this is what we refer to as a rapidly progressive dementia which signifies that it has been under six months and there are no other features to further explain the clinical course or the deficits. Patients back home who present to clinic with this story are admitted to the hospital for an expedited evaluation that would include imaging with an MRI scan, a lumbar puncture and an EEG, the latter to rule out non-convulsive status epilepticus, though this would rarely be the cause for someone having months of a progressive decline. There are certainly a number of infectious and nutritional causes for a patients presenting with this story, such as syphilis or thiamine deficiency (Wernicke-Korsakoff syndrome), but this patient didn’t have any further history that would support such diagnoses – he didn’t drink or smoke and had led a very pedestrian lifestyle prior to this occurring.
When Alex finished with his evaluation, he came to me to present the case and it didn’t take very long for me to know what the most likely diagnosis was going to be and which he had already come to on his own. Creutzfeldt-Jakob disease, or CJD, is a prion, or slow virus, infectious disorder that exists in this world and appears to have had an increasing incidence over a number of years. The other name for it is spongiform encephalopathy and though there are familial cases of this disorder, by far the majority are sporadic with no clear or known exposure except in the rarest of cases. We see these patients on a regular basis back at home and will usually have one on the inpatient ward at any given time and it is a devastating diagnosis for both family and caregivers as it is fatal and the course is unpleasant with death typically occurring by around 6 months in most cases. Though it is ultimately a clinical diagnosis meaning that the history and examination are enough to make the diagnosis, there are certainly supportive tests, the most helpful of which are on the spinal fluid. There are other features, though, such as imaging abnormalities on MRI and EEG changes that can be very helpful, but are not necessary to make the diagnosis.
Ultimately, there was little else that this patient could have and there were no tests here that we could do to be supportive of the diagnosis, though we could rule out things with some blood tests, such as HIV and syphilis, as well as to get a CT scan to make sure there not a mass lesion of massive hydrocephalus, though these entities didn’t really fit with the rapidity of this patient’s clinical course. Making this diagnosis and having a discussion with the family, and sometimes the patient depending, is a tough enough task at home, but trying to have this conversation here in Tanzania when we’re doing everything through a translator can be a real chore and you always worry about losing things in translation. Though an MRI scan is preferred as you can possibly see changes consistent with CJD, the real reason for getting an imaging study was to be certain it wasn’t something else and, for that, a CT scan would answer the question for less money and effort as the closest MRI is several hours away. Though it will not very likely change our management on this patient, we recommended a CT scan of the brain with and without contrast and laboratory studies that would allow us to reassure his family. After Alex had a discussion with the patient’s son, he agreed to come to FAME on Thursday to get a CT scan and the lab work.
It was a steady day of patients in the end and I think everyone felt as though they had accomplished much over the course of the day. I believe that we ended up seeing a total of 29 patients which is not a bad day of work, and even though we have no wRVUs (relative value units which is the measure by which physicians are assessed as far as their productivity) to show for it, there was little question that a great amount of good had been accomplished by the neurology team and they could be very proud of that. Our ride home was beautiful and otherwise uneventful.