Thursday, March 19 – A day of epilepsy patients and a visit to Teddy’s….

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Clothes washed by hand by families of the patients hanging outside the maternity ward

It was education day and the last of the four lectures for the residents today – the staff had asked for a talk on mood disorders (depression) as well as associated conditions, so Lydia and Ozi had taken on the challenge. As neurologists, we do receive extra training in psychiatry and, in fact, our board in the US is the American Board of Psychiatry and Neurology from which we obtain our board certification, though it is specifically in neurology and the examinations are completely separate. The fact of the matter, though, is that we end up treating all of the psychiatric disease when we’re here and, as Frank has reminded me many times, we’re the closest thing to a psychiatrist that they have here. Unfortunately, he can also go to extremes with that philosophy like when he wanted me to be the one to place burr holes here for subdural hematomas – “you’re a neurologist and you know where the problem is so you should just drill the hole,” I would often hear from him. I continually fought back as I’m not a surgeon (you would not want me operating on you) and was eventually able to bring Sean Grady, then Penn’s chief of neurosurgery, to FAME to teach the clinicians here, all of whom do surgery, how to place burr holes and save people’s lives. I have always been one who knows my limitations and have never felt obligated to do things that I’m not trained to do nor comfortable doing.

Lydia and Ozi’s talk went over very well, and so much so, that they spent an entire hour presenting the subject with lots of questions at the end, and were never once shoed off the stage or hurried despite the fact that the talk was supposed to only be 45 minutes including questions. The entire staff were incredibly attentive during the entirety of their talk and their questions clearly indicated just how much they were able to absorb on the subject which was quite a bit. We do have reasonable medications here including the SSRIs, SNRIs, atypical neuroleptics and typical neuroleptics, as well as both valproic acid and lamotrigine for bipolar disorder. Gabriel asked me about lithium (commonly used for bipolar disorder), which is available here, and why he’s never seen me use it – my response was because it scares me when you don’t have lithium levels to follow and lithium toxicity can be extremely serious and harmful.

Lydia, Saida, and Yoon Ji with a pediatric patient

Our clinic for the day was a mix of patients, though the predominance was, once again, epilepsy with a smattering of everything else, including schizophrenia, migraine, post-concussive headache, dementia, catatonia, and stroke, though not to forget the one patient with musculoskeletal pain who that slipped through triage. From very early on, it was clear to us that epilepsy would have a place of its own from a standpoint of need, not only because there were so few neurologists here to treat it, but mainly due the impact that epilepsy has on the patient, the family and society when it is not treated properly. In addition, it was also clear that the burden of epilepsy here was immense. To begin with, 90% of epilepsy in the world occurs in low to middle income countries which is exactly where there are the fewest neurologists to treat it – patients with epilepsy in Tanzania, like much of Africa, have essentially no chance during their lifetime to see a neurologist, let alone an epilepsy specialist, as there are so few of either here. Physicians in Tanzania have very little neurology education during their medical education and training and almost none have ever had the opportunity to work with a neurologist during their training or in their career.

In addition to the social stigma of having epilepsy and seizures, the risk of uncontrolled epilepsy has a huge impact on disability, as patients with epilepsy are extremely likely to suffer serious injuries such as burns (households in Tanzania cook over open fires) and fractures. We have seen so many severe burns here from children or adults with epilepsy who fall into cooking fires or accidentally spill boiling porridge on themselves that it is clearly a major health risk. And none of this even takes into account the much higher risk of SUDEP (sudden unexplained death in epilepsy) in those patients with poorly controlled epilepsy. Lastly, children with poorly controlled epilepsy are not allowed to attend school which places a huge burden on their family given the likelihood that they will never be able to earn a living sufficient to support themselves with no education. With all this in mind, it was clear to us that successfully treating epilepsy patients, and especially children, would make a huge difference.

Dorothea and her mother in clinic last fall

I had first met Dorothea Dickson in 2011 – she was a 9-year-old child who had a history of a likely neonatal stroke that resulted in her having a spastic right hemiparesis, but more importantly, she was having focal and secondarily generalized seizures that had never been controlled on medications, and, as a result, she had never been allowed to attend school. Over a short period of time, we were able to titrate her onto an appropriate dose of carbamazepine (one of the more common and least expensive antiseizure medications used here which was appropriate for her likely seizure etiology and type, and she became seizure-free after many years of uncontrolled seizures. Equally important, she was able to begin attending school and was eventually able to begin secondary school. Dorothea, who is now 23 years old and who has been seizure-free for many years, was seen today in clinic and continues to do remarkably well as far as her seizures are concerned. Had it not been for our neurology clinic at FAME, and its emphasis on epilepsy, it’s hard to say what would have happened to Dorothea, and quite frankly, whether she’d still be alive today.

Showing off their new threads

Once we had completed our clinic for the day, we had planned to go back to Teddy’s to pick up the clothes the residents had ordered the week prior. It’s always a joy for me to visit her as she has two very young children, Allan and Adrian, who I always enjoy seeing as having clothes made is really not my thing personally, and other than a few shoulder bags that I’ve had made as gifts, I’ve lived vicariously watching everyone else buy their fabrics, communicate what they would like to have made, and then enjoy the fashion show when we go back for their fitting. Also, over the last couple of years, Teddy has also been keeping all of her fabric scraps for Jill to use for her artwork, so that’s been another thing for us to get done when we visit. A giant sack of fabric scraps is excellent to use for padding gifts in your luggage.



A scene outside Teddy’s shop

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