Wednesday, October 1 – A long-term patient of mine and a visiting pediatrician…

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Julius Nyerere – Baba wa taifa

Not only is this a presidential election year for Tanzania (once every five years here as opposed to our four), but the elections will be happening at the end of this month. There is always a significant amount of campaigning going on as there are many political parties in the country (this is anything but a two-party country), though a single party has been in power since its independence from the British Government in 1961. Julius Nyerere, who is revered throughout Tanzania, became the prime minister in 1961, and then president of Tanganyika in 1962. When Tanganyika and Zanzibar combined, he became president of the new United Republic of Tanzania and remained the head of office until 1985. His party, Chama Cha Mapinduzi, or CCM, has remained in power since independence despite robust challenges by several other strong opposing parties, as well as partnered opposition. The current president of the country, Samia Suluhu Hassan, or Mama Samia as she is known throughout the country, who took office in March 2021 with the death of John Magufuli for whom she was serving as vice-president, is also a member of CCM and is also originally from Zanzibar.

Zai, Dr. Annie, and Natalie evaluating a patient

Over the next several days, Mama Samia will be traveling through Karatu during her campaigning for the upcoming presidential election, so we are expecting a significant number of political rallies to be occurring, both for CCM as well as their opposition. Though these rallies are for the most part peaceful, we are always advised to steer clear of them for many reasons, but the most significant being our safety. International SOS, an organization providing global logistical and medical assistance to academic institutions and others, and who we are covered through the University of Pennsylvania, is constantly sending us notices regarding the changing political and medical landscape for those regions we’re traveling in. When there are reports of Ebola in the DRC (which borders Tanzania along Lake Tanganyika), we hear about it. Likewise, when there are safety concerns for us regarding large political rallies or demonstrations, we receive notices to avoid these at all costs. During these days, we’ll remain at FAME and hold off from going into town or doing any of the other activities we often do here.

Dorothea, me, and her mother

A long-term patient of mine came to clinic today in follow up. I have been following Dorothea since at least 2013, when she first presented to neurology as a 10-year-old adolescent with a spastic right hemiparesis since birth and a long history of focal onset seizures that had failed to be completely controlled with the any of the medications that had been tried in the past. As a result of her continued seizures, she hadn’t been allowed to remain in school, which is pretty much a standard policy here, and any hope for her to learn a vocation or to possibly continue on into second school had been pretty much dashed at that point. As is very often the case here in Tanzania, even when an attempt is made to treat epilepsy and multiple anti-seizure medications are trialed, they are used at very low (subtherapeutic) doses and the patient is never maximized on a single medication to determine whether the medication will work at the higher doses that are often necessary to control their seizures.

Such was the case with Dorothea, and the carbamazepine dose that she was on when I first saw her was far too low to hope for control of her seizures despite it being an excellent choice control her seizures given that they were likely of focal onset. We were able to quickly control her seizures by increasing her dose which she tolerated well, and she was able to go back to school where she excelled, eventually finishing primary school and going on to Secondary after passing her exams. Though we did try to switch her to lamotrigine at one point given the fact she is a young woman (childbearing age), though she didn’t tolerate the medication, and she was eventually switched back to carbamazepine which has been working well for her. During today’s visit, though, she did report some brief lapses during the daytime that were concerning for small focal seizures, so her medication was increased slightly, and we’ll monitor her going forward. Carbamazepine is an older medication that works well for seizures, though does have other concerns for long-term use such as osteoporosis, which the newer medications have much less so. We’ve counseled her on taking calcium supplements along with her folic acid, something that is used in all women of childbearing age with epilepsy. I’ve included a nice informational video about our FAME Neurology Clinic in which Dorothea and her mother participated

Dr. Ivone, Zuhura, Novati, and Leah evaluating two sisters

Meanwhile, Leah evaluated two sisters, age 6 and 9, who were being seen for the first time by us, and each of them had progressive neurologic dysfunction that could best be characterized by difficulty with gait, cerebellar dysfunction, and hyperreflexia. The two girls’ exams were subtly different, though it would be most likely that we’re dealing with the same condition with subtly different phenotype (neurologic deficits) and was very likely genetic in nature. The girls have three healthy brothers with no similar symptoms whatsoever, though also have a young newborn sister who has yet to demonstrate any similar symptoms.

Zai, Dr. Annie, and Natalie evaluating a baby

Unfortunately, we have no access to genetic testing here at FAME, or anywhere in Tanzania for that matter, which means that we may never know the full story. Though doing CT scans on the girls would not likely lead to any treatment options, it might be helpful in looking for some characteristics that could be helpful to a discerning a diagnosis. We made certain to point all of this out to their parents as the last thing we wanted would have been for them to have had any expectation otherwise, but we also didn’t want to invalidate their concerns. The parents ended up wanting to proceed with the CT scans on each girl, and though there were no obvious abnormalities, they each seemed to have some degree of cerebellar and brainstem atrophy that was convincing enough for us to be concerned and would have explained the neurologic findings that we saw.


Another pleasant surprise for today was that we had a guest from Dar es Salaam and CCBRT Hospital arrive would be spending time with our clinic over the next several weeks. Ivone Mwakasege is a pediatrician who is currently working at CCBRT and whose husband is a pharmacist who spent several weeks at Penn this summer as a global scholar through the Center for Global Health. I had met with him given our common interest regarding Tanzania, and it was then that he informed me that his wife was working at CCBRT and would be very interested in coming to Karatu and joining our neurology clinic for several weeks. I invited Ivone to come join us for the second three weeks of our visit as that would allow her to work with both Leah and Natalie and perhaps see more pediatrics. We’re certainly looking forward to having Ivone work with us given her interests in pediatrics and neurology and the possibility of future collaborations with FAME. It was serendipitous to have met her husband, Nelson, over the summer, but that’s often how things happen in life and is certainly how so much is accomplished in Africa.

Leah enjoying life

It was a quiet evening for us at home and both Natalie and I had separate Penn conferences to attend on Zoom from 7-8 pm. Her’s was a weekly stroke conference and mine was our monthly neurology M&M conference which I had described previously. We ate dinner a bit late after the conferences and then Leah worked on her presentation for the next morning.

4 thoughts on “Wednesday, October 1 – A long-term patient of mine and a visiting pediatrician…

  1. Nelson Masota

    Wonderful Highlights Mike!
    Congratulations to you and the whole team at FAME.
    Many thanks for welcoming my wife Ivone to this wonderful experiential learning opportunity.

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