University of Pennsylvania neurologist Michael Rubenstein has been helping patients in rural Tanzania since he first went to the Foundation for African Medicine and Education (FAME) clinic there with his family in 2010. Now, he takes neurology residents and fellows twice a year to treat patients, many of whom have epilepsy. He chronicles their work on his blog.
Here is the story of one of his young patients:
I met Roza nearly a year ago by video on the Internet. She was a 14-year-old girl brought to FAME two months after she fell out of a tree and later began to have abnormal movements and then lost the ability to walk or talk.
We frequently receive photos and videos from the clinic seeking advice about patients, but this one felt particularly urgent.
My colleague Dr. Danielle Becker and I replied nearly simultaneously with Roza's diagnosis - Sydenham's chorea, or, as it once was known, St. Vitus' Dance.
What came next was a story of teamwork, patience, perseverance, and resilience.
Roza's affliction had nothing to do with her fall.
Sydenham's chorea is an autoimmune movement disorder directly related to acute rheumatic fever or endocarditis caused by a strep infection, which we could see on Roza's echocardiogram.
Her condition is so rare in the United States many neurologists have never seen a case of it.
But not only is it more common in low-resource nations like Tanzania, it ordinarily goes undiagnosed. If not treated early, the endocarditis will cause severe and life-threatening heart-valve disease. Patients lucky enough to survive would need valve-replacement surgery, which most people can't get in Africa.
After consulting with a mentor of Dr. Becker's, an expert on Sydenham's chorea at the National Institutes of Health, Roza was immediately placed on antibiotics and steroids.
Her movement disorder improved, and the infection cleared up.
But when Dr. Becker and I arrived nearly three months later, in March, Roza's movement disorders had returned and she was having difficulty going to school. We gave her steroids again, and she improved.
We could see that it required a great deal of trust by both Roza and her mother to go through another round of treatment. Few patients anywhere welcome having to take long-term medications. And considering that Roza's family was not at all accustomed to regular medical care, their commitment to the regimen we prescribed was impressive.
When I returned again in September, she was doing very well. Her abnormal movements were so slight only a neurologist would notice. A visiting cardiologist delivered the wonderful news that her echocardiogram suggested she needed no more cardiac care. She does need to continue taking antibiotics for many years - until she's 40, under current recommendations - to prevent another bout of endocarditis.
Recurrent infection is always a risk in Africa, but Roza's story gave our team reason to celebrate. Had the doctors at FAME not sent us that video, it is likely she would have suffered further complications from rheumatic fever and endocarditis. And through it all, Roza has remained an incredibly courageous young woman whose determination to get better is an inspiration to everyone who has had the privilege of caring for her, but most of all to me.