When she was growing up in Northampton, Julianna Shinnick couldn’t help feeling a little different at times.
As a young girl, she’d struggled with strange seizures: moments when she’d suddenly lose focus and concentration and even have momentary hallucinations. She’d be in the middle of a conversation and fall silent; some years later, while playing her violin during a high school musical, her mind went blank and she dropped her instrument, picking it up perhaps 10 seconds later when she realized what had happened.
It wasn’t until she was 12, Shinnick says, that a referral to a neurologist, and a subsequent EEG test, pinpointed the problem: epilepsy. Even after that, various medications she tried did not help her, instead producing side effects such as extreme fatigue or an overall loss of concentration. “Seventy percent of people can take [epilepsy] medications and be fine,” she says. “I was one of the 30 percent who can’t be helped.”
Now 27 years old and living in Philadelphia, Shinnick, a 2010 graduate of Northampton High School, looks back with great appreciation for all the support she received — from her family, doctors, teachers, friends and classmates — when she was younger. But still, she notes, “I could feel self-conscious sometimes, you know, ‘I’m different than the other kids.’ At JFK [Middle School], I wasn’t allowed to swim … I didn’t know anyone else with epilepsy until I was in high school and I began making contact with other people online.”
But in the past eight years, things have taken a dramatic turn for Shinnick, who today is in a master’s program for nurse practitioners at the University of Pennsylvania in Philadelphia. When she was 19, she had brain surgery that ended her seizures and gave her, as she puts it, “a new lease on life. I had all this energy … It’s like when you get glasses — you think you see well, then you put on glasses and suddenly you’re like, ‘Wow, there are leaves everywhere!’ I was like that when I woke up [from surgery]. Everything was clearer.”
That clarity and renewed energy has in turn helped Shinnick forge a connection to a place halfway around the world — Tanzania — where a disproportionate percentage of the population struggles with epilepsy. In a rural area of that African country, Shinnick has joined efforts by researchers and in particular a Catholic priest — a man Shinnick calls a “humble genius” — to help people with epilepsy develop working skills and change societal prejudices against those with the condition.
In fact, Shinnick calls her connection with Father Placid Kindata, who works in the Mahenge Diocese in western Tanzania, one of the best things to emerge in her post-surgery world. “It blows my mind sometimes that I have this great friendship and collaboration with Father Placid that seems so unlikely,” says Shinnick, who has gone to the village of Mahenge and the surrounding area several times in the past six years to help with vocational training for people with epilepsy.
And just a few weeks ago, Father Kindata made his first-ever trip out of Tanzania, coming to visit Shinnick in Philadelphia and at her family’s home in Northampton (he had previously met Shinnick’s mother and father, Margot and James, when they joined their daughter on a trip to Mahenge). Father Kindata also visited Massachusetts General Hospital (MGH) to see how epileptic patients are treated there, and he and the Shinnick family hosted a fundraising effort in Northampton to generate monies for the vocational program in Mahenge. That effort led to donations of about $3,000, Julianna Shinnick said.
Kindata, in an interview at the Shinnick home, said many people in his country, especially in rural areas, have unreasonable fears about epilepsy — that the disease is communicable (it’s not), that people with epilepsy may be possessed or cursed, that the illness makes people useless and unemployable. For the last 10 years, since coming to work at a seminary in Mahenge and meeting a leading researcher of epilepsy in the region, Dr. Louise Jilek-Aall of Canada, he has overseen a farm that employs and teaches skills to people with epilepsy. He also works to help make medicine available to them.
“We are trying to show that people [with epilepsy] should not be discriminated against, that they can go to school and work just like anyone,” Kindata said. “In that way we hope we can teach society by actions, more than by words.”
And he and others involved with Tanzanians with epilepsy hope to get some additional help from medical professionals here in Massachusetts. Amy Morgan, a neuropsychologist with MGH who has previously worked with Shinnick (Shinnick underwent her brain surgery at MGH) and visited Mahenge with her this past summer, says the hospital is putting together a grant proposal to send MGH staff, through its Global Health Program, to Tanzania to provide medical training, additional research on epilepsy, and other services.
The through-line connecting Julianna Shinnick and Father Kindata dates back to 2014, when Shinnick was an undergraduate at Vassar College in New York state. There, she studied neuroscience and sociology, and wrote a research paper on human rights and epilepsy. In her search for information, she learned about the high concentration of epilepsy cases in the Mahenge area and about the research the Canadian doctor, Louise Jilek-Aall, had done there for decades.
Jilek-Aall, who was born in Norway in 1931, first came to work in Tanzania in 1959 and some years later founded a clinic in Mahenge to help treat people with epilepsy. Shinnick says she has authored or contributed to about 100 research papers on the subject and is highly esteemed in the field. Kindata also notes that Jilek-Aall became widely known as “Mama Doctor” in the region.
Shinnick became intrigued with the story and got in touch with Jilek-Aall by phone; she urged Shinnick to go to Mahenge herself. “When I talked to her, she said, ‘You need to go because I’m 80 now. We need young people like you to keep doing this work.’ ” (A nonprofit group later flew Shinnick out to Vancouver so that she could meet Jilek-Aall in person.)
Shinnick then won a $10,000 grant from the Davis Projects for Peace program, created by the late American philanthropist and women’s rights activist Kathryn W. Davis, to start a vocational program in Mahenge for people with epilepsy to learn skills such as carpentry, brick laying and tailoring. She spent about two and a half months in the region, where she met Kindata — she had previously read about his work running a farm there with people with epilepsy — and was struck by the overall support he gave the community.
“Father Placid was already doing such incredible work there with the farm, and he had so much love for so many people,” she says.
She and Kindata both say there’s no clear explanation for why so many in this area struggle with epilepsy. By some measurements, the percentage of people with the condition is 15 times higher than it is in the United States. (Both also point out that epilepsy is far more common in developing countries than developed ones.) Part of the issue in Mahenge, Kindata says, is a lack of epilepsy medications — broadly known as anticonvulsants — or inconsistent supplies of them. “It is a very rural place,” he says. “Not a lot of electricity.”
Shinnick says a current hypothesis suggests epilepsy rates there are linked to river worms that also cause onchocerciasis, more commonly known as river blindness, another health issue in Tanzania and other parts of Africa. “The theory is that people’s auto-immune systems try to attack the bacteria [that cause river blindness], but instead they attack people’s neurons,” says Shinnick. “It’s like friendly fire, though it’s strange because there’s river blindness in many other parts of the world but no corresponding epilepsy cases.”
Kindata says increasing regular access to medicine for people with epilepsy could go a long way to reducing the stigma many patients face. “People are frightened when they see [someone with epilepsy] have a seizure … sometimes they fall in the road, they can fall in a fire, so they assume these people are not intelligent, they are not civilized, they are possessed, everything they can imagine.”
In the meantime, Kindata has expanded his farming program in recent years, such as introducing a drip irrigation system that allows for growing crops in the region’s traditional June-November dry season. Other efforts involve broadening the types of crops grown and training people to do beekeeping and raise fish in stock ponds. Using different sources of grant money, Shinnick and Kindata have also started a program (openmindmicrofinance.org) to raise monies for education and vocational training for young people in Mahenge with epilepsy.
Shinnick currently works part time as a nurse practitioner at the Children’s Hospital of Philadelphia, in the hospital’s adolescent unit, and she wants to work in the future with HIV patients — and get a PhD in global health. “I’m interested in working with underserved populations,” she says, adding that she hopes to continue working with Kindata in Mahenge as time and work/study commitments allow.
She also says her own experience with epilepsy — and her recovery from it — has made her both sensitive to the needs of others and optimistic that change can occur. At times she’s wondered how she might have fared had she been born in Mahenge rather than the U.S. “I chose this field because doctors and psychologists were so supportive of me growing up. I want to be part of that myself.”
Her parents, needless to say, have been thrilled to witness the transformation in their daughter and the connections she’s forged in Tanzania. Margot Shinnick says Julianna’s experience with epilepsy led “to some uncertainty in her life, and the life of our family. There’s some degree of anxiety and grief, too.… But now to see the relationships she’s built with people [in Mahenge] and her commitment to helping others with epilepsy … I’m just so grateful.”
Margot Shinnick especially credits Dr. Elizabeth Thiele, the director of MGH’s pediatric epilepsy department, for her past work in helping Julianna and guiding the Shinnick family through the details of Julianna’s condition and suggesting the surgery that changed her life. “And just all our friends and neighbors and the whole community in Northampton,” Margot Shinnick added. “Everyone was so supportive.”
Amy Morgan, the MGH neuropsychologist, first worked with Julianna Shinnick before she underwent brain surgery, and she’s also impressed with how far her former teen charge has come. “When we were in Africa, Julianna was by far the adult in our relationship,” she says with a laugh. “She was in charge, she knew her way around — I was lost.”
Morgan also is impressed by the connection Shinnick has forged with Kindata and the work the latter has done in Mahenge. She says that after she and Kindata toured MGH and discussed his work with epilepsy patients in Mahenge, a number of staff at the Boston hospital said they’re “on board” with the idea of traveling to the region to help, possibly by next summer. “And because of the uniqueness of the type of epilepsy, and the prevalence of it there, it also happens to be kind of a good draw [for research],” she notes.
Kindata, for his part, says he’s grateful for his friendship with Shinnick and her family and the help she and other westerners have given him. With some medical equipment donations to the region, additional training for doctors and other improvements, such as a regular supply of medicine, “we can continue to show that [people with epilepsy] are an important part of the community,” he says. “No different than me or you.”
To support education and vocational training for young people in Mahenge with epilepsy or for more information, visit openmindmicrofinance.org.
Steve Pfarrer can be reached at spfarrer@gazettenet.com.