Thursday, September 17 – Waking up in paradise….


It has always been difficult for me to convey to others just how incredibly beautiful it is here in the Ngorongoro Highlands where FAME is located. Essentially everyone I have brought with me over the years has been immediately astounded at the shear magnificence of the topography that surrounds Karatu. FAME itself sits high above the town and is reached by a several kilometer road that in the best of times is rutted and bumpy and the worst of times, nearly impassable due mostly to the slickness of the clay here when it becomes wet. Be that as it may, it is this road that has seen fit to bring me back to FAME each and every time I have come and, for that, I am very thankful to it.

My bedroom at the Raynes House. Notice the messy desk – no different than home😂

The very first thing that I do when I arrive here is to open all of the windows of the house or, to be more accurate, the ones that have screens on them so as not to have a houseful of mosquitos in no time at all, though to be honest, the mosquitos here at this altitude are pretty minimal. As we are a bit over a mile high here, the temperature at night can be pretty chilly, but it is crisp and refreshing to be sure. As I wake up for my first full day at FAME, the weather was a bit overcast breezy and cool, which is often the case but will typically burn off by late morning to reveal a beautiful clear sky and a view of the surrounding vicinity with the crater rim on one side and hills dropping off to the Rift Valley on the other. The house is empty, of course, as I have come alone this time without my normal entourage of residents, medical students and an occasional fellow faculty member. We normally have all the bedrooms filled and are often spilling over into the adjacent houses to accommodate extra bodies. But for this trip, with the ongoing pandemic and the limitations that the university has placed on travel in general, I have come alone to provide whatever help I can to our population of neurology patients.

Somehow, though it’s really not surprising considering the traveling that I’ve done, I’ve managed to pick up a rather typical head cold and thankfully not something more severe such as COVID-19. Everyone here at FAME is masked and it has been that way since the beginning of the pandemic for them. Most of the patients, of course, do not come with masks as no one is wearing them in town, so FAME has manufactured a tremendous number of cloth masks that can be worn by patients and visitors and then washed appropriately. Meals for the staff are now eaten outside and social distancing is the norm which is not the case at all in town and which is very unfortunate indeed. Greeting my friends here, some of who I have known for ten years and see only twice a year, is difficult for me to accomplish without my normal bear hug for everyone. I must admit, though, that I’ve sneaked a few in here and there, but only in the proper situation and never in front of patients. I’ll wear my mask when going into town, but I will be the only one doing so, unfortunately.

My two cabinets where I store my clothes and supplies in between trips

Thursday mornings are reserved for an educational lecture for the doctors and when I have the entire group of residents here with me, they are typically giving lectures on some neurology topic. This morning’s was given by a cardiologist who is Muhimbili and he was talking about rheumatic heart disease, a disorder that is caused by a strep infection during childhood and is seen here in low income countries to a tremendous degree more than in than in higher income countries where the infection occurs much less and is treated far more quickly when it does occur. Interesting, rheumatic fever does have an interest in the neurologic world as in certain cases patients will develop a movement disorder called Sydenham’s chorea and though it is something that is rarely seen in the US, we have seen several cases here that have been dramatic. One such case occurred in 2013 in a young woman who presented with chorea and was very encephalopathic and mute. They sent a video to both myself and Daniel Becker and we simultaneously replied “Sydenham’s!” It’s very important to recognize this as the strep infection must be treated immediately to prevent further heart damage from the infection, and the movements can actually be treated acutely using steroids. It was wonderful save for this 11-year-old girl as subsequent echocardiograms demonstrated that though she clearly had endocarditis, it did not do enough damage to require a valve repair in the future and her movements lessened significantly over time until they were non-existent. We followed her for several years ensuring that she remained on her prophylactic penicillin, but we eventually lost her to follow up as she moved away with her family which was unfortunate as the prophylaxis must continue for many years and I am fairly confident that is not happening.

The living room of the Raynes House

Given the absence of the neurology residents this trip, and in general going forward with this new world order in the midst of the pandemic, it’s become clear that we must develop an alternative mechanism to provide some of the educational services, such as our lectures, that were being provided in person in the past. In comes Zoom, which has now become ubiquitous in our new world as everyone is now quite familiar with this technology whether it be in business, education, or among family members. It has now become the standard for delivering synchronous (live) conferences throughout the world and works well in regions without highspeed internet such as here where almost all of the internet is delivered over cell towers whether you have a router or not. Recognizing this need for an alternative means of delivering our lectures, we have now created a neurology series of lectures that will be given by the neurology residents from Penn twice a month with an additional month case conference lecture where the doctors here can present interesting cases to be discussed.

This evening, we held our very first lecture that was given by Mike Baer, who was here last September, and Jess Fan, who had been scheduled to be here now, but was unable to travel due to the pandemic. After some initial technical challenges (basically figuring out who was serving as host as it was my account, but Mike had signed in as me) the lecture got off without a hitch and was being recorded. The topic was “Assessing the Neurological Patient,” and it was done using case examples. We had about 13 or so attendees that were not only from FAME, but also from the district health personnel and we hope that the number will grow over time. The residents at Penn were all incredibly excited to be participating in this new program and a number of our graduates who have been to FAME were also interested in participating which will be a help as a number of them are on the west coast which will work far better with the time difference. Tonight’s lecture was given at 8 pm Tanzania time, or 1 pm EST, but in the future, some of the lectures will occur at 7:30 am our time, when the usual education lectures are given, but would be 12:30 am EST, yet only 9:30 pm PST. I am so happy that we are able to provide these education lectures as it will further ensure that the doctors here are prepared to recognize and evaluate neurological illnesses, which has been the whole purpose of our being here over the last ten years.

Our kitchen in the Raynes House with an incredible view

Our clinic today turned out to be mostly patients with epilepsy and I have spoken many times in the past of the importance of this diagnosis above all as a place where we can make our greatest impact. Ninety percent of the worlds epilepsy exists in low to middle income countries where there are not only the fewest neurologists to treat it, but also the poorest access to health care and the fewest government dollars dedicated to health care in general. It really does provide the perfect storm to have an illness that exists in its highest percentage across the globe and in a region least equipped to treat it. For this reason, epilepsy has become a major focus of ours over the years, both from the standpoint of emphasizing much of our education for the doctors here on the identification and treatment of these disorders as well as educating the community as to the fact that these are treatable disorders. Some of our most rewarding cases over the years have been those in which we have been able to not only treat a patient’s epilepsy successfully, but have also been able to make a major change in their life.

One such patient was returning to clinic today to see me in follow up and I was greatly looking forward to seeing her. Paula (not her real name) is now a lovely 17-year-old young woman who I had first met in 2011 during one of my visits. She has a history of a perinatal insult, very likely a stroke, and she has severe weakness on one of her sides such that her arm is useless and her leg is only strong enough to allow her to walk, though with severe impairment of her gait. As is so often the case, she had essentially overcome the issue with her weakness and was able to function reasonably well, but her limited problem was her frequent seizures that were occurring as a result of the injury to her brain. They were occurring daily and, because of this, she was not able to attend school which would be a major impediment to her becoming self-sufficient in the future. I see this so often here, children that are otherwise normal developmental and cognitively, who are not able to attend school because of an otherwise treatable problem that just hasn’t been addressed in a fashion that would be successful.

The view out the bedroom window

Not only is there the matter of social and cultural stigmatization surrounding seizures and epilepsy, there is the issue of injuries. Patients can fall and injure themselves severely, but the injury that we see here that has the greatest impact both on mortality and morbidity as well as stigmatization are severe burns. Almost every home here in Tanzania uses open flames to cook, whether it be an open fire or a propane tank with a burner, and it is these open flames that pose the greatest danger to our patients with epilepsy. Frequently, patients will have seizure and fall into the open fire pit or onto a pot of boiling porridge, causing burns over much of their body or just a single limb and leaving them permanently disfigured and disabled. These burns can not only be life threatening from the burn itself or the infection that follows, but when they involve any joint, they will often cause contractures of the skin and soft tissue, making the joint functionless and disabling the patient. I have seen this so many times, both in the acute phase when the patients are in the ward here, but also the aftermath when they come into clinic to see me with their story of having fallen into a fire as a child.

Thankfully, Paula had not suffered one of these burns, for I believe that her attentive family likely prevented this from occurring, but her seizures were occurring so frequently that I had no doubt she would suffer some injury if we were not able to get them under better control. It wasn’t easy, as this was in the early days of my work here and I hadn’t yet spent enough time with the doctors here for them to have felt totally comfortable with seizure management, but we were able to at least make a major impact in the seizure frequency early on to the degree that she was able to return to school. Early on, she was still having an occasional seizure as we were adjusted her medications and it took some effort to make her school understand that she was perfectly fine for her to attend with an infrequent seizure necessitating a few notes from me, but in the end, we were able to keep her in school and her seizures were eventually well controlled. It has now been a number of years since her last convulsion.

One of my roommates. A delightful gecko

Today, Paula is a bright and successful student who is currently in Form 2 (the British system of school) and plans to go on in her studies to become a teacher. I can’t think of more appropriate profession for her as she will be able to make the greatest difference in that role considering the hurdles that she has overcome already in her young life. I am totally confident that she will succeed in whatever goals she wishes to pursue and I look forward to continuing to follow her for many years into the future.

Leave a Reply