The lifelong dreams of EEC optometrist Susan Primo sent her on a mission to Tanzania this fall. It won't be the last one.
There are a lot of things that qualified Susan Primo to participate in a recent medical mission to Tanzania.
Her resume includes advanced degrees in optometry and public health. She's a fellow of the American Academy of Optometry. And she has honed her skills for almost 30 years as an optometrist at the Emory Eye Center.
But what motivated her were not the sort of credentials that show up on sheepskin.
It was always my family's lifestyle to give back and It's always been in my plan,
said Primo, who is already planning her return to Tanzania.
As a child, my family moved a lot to follow my father, a minister [Rt. Rev. Quintin E. Primo, Jr., whose papers are housed at Emory]. It was an amazing experience. My father marched with Martin Luther King, and we learned a lot from that, to be aware of the work you do, to make it meaningful. Eventually we moved to Chicago and my father became the Episcopal Bishop there. Seeing the need, he opened up a homeless shelter, the Primo Center for women and children. My brother [Quintin E. Primo III] and his wife, [Diane] remain co-chairs of the Board of Directors. It's a thriving community facility in urban Chicago.
Working with Standing Voice
Her decision to tackle a health crisis on the other side of the world was a personal one for Primo. Aided by some SOUP funds, she used personal vacation time and personal funds to support much of the 11-day trip to Tanzania this past October. There, she celebrated what she considers the spirit of World Sight Day by staffing a vision clinic in Dar es Salaam that saw nearly 500 patients with albinism in five days.
The entire mission was coordinated by Standing Voice, an international non-governmental organization (NGO) dedicated to promoting healthcare access for, and defending the rights of, Africans living with albinism. Established 16 years ago, Standing Voice has created clinical networks to manage visual impairment and to prevent and treat skin cancer in Tanzania and Malawi, the hardest hit countries on the African continent.
In the United States, we might see albinism in maybe one out of 20,000 births,
said Primo. But in Tanzania, the incidence is closer to one in 3000. And the impact it can have over a lifetime, if untreated, is overwhelming.
Defying the scourge of albinism
Triggered by a recessive genetic condition that impairs the body's production of melanin, albinism reduces or eliminates pigmentation of the skin, hair, and eyes. This renders patients more vulnerable to the sun's UV rays and, thus, to skin cancer. It also causes people with albinism to be visually impaired.
The social and economic impacts of this disorder are far-reaching. In Africa, a sun-drenched continent rich with rainbows of melanin, people living with albinism stand out and are often ostracized. According to a report issued by Standing Voice:
Many people with albinism are shut out of civil participation and unable to access the most basic opportunities and services, including healthcare, education, justice, housing, and employment. Rape of women with albinism is often thought to cure infertility and AIDS, while opportunistic witch doctors incite violence by peddling the myth that the body parts of people with albinism can generate wealth.
The organization found that half of all the violence visited upon people with albinism in Africa occurs in Tanzania and Malawi. And even if it does not always translate to violence, the social isolation suffered by many people with albinism leads to lifelong disparities in education, training, and economic well-being.
Collaborating with new partners
Primo was aware of these challenging statistics before she undertook the assignment in Tanzania. They didn't faze her. Inspired, perhaps, by her father's example and informed by her own experience working in a multi-cultural urban setting, she prepared by adopting a truly teachable attitude before entering the Tanzanian clinic.
The most important thing was to remember is that they already had some very knowledgeable and skilled optometrists there, so I came in humble, ready to hear and see how they did things,
she said.
And I don't speak Swahili so I had to slow myself down to work with a translator.
As she became acclimated to her new colleagues, Primo was able to bring some of her advanced medical training into their collaborations.
The optometrists in Tanzania usually do not have the same medical background that optometrists from the United States have, so I was able to teach them some things. I worked with five optometrists and actually gave a couple of talks - including one on how to manage patients with advanced visual field loss and another on surgical approaches to central vision loss like the Implantable Miniature Telescope.
Knowing she was coming into an under-resourced environment, Primo brought some low-tech tools to help her clinic colleagues and her patients in Tanzania: hand-held occluders, dome magnifiers, and near-point vision cards. Essilor Foundation donates surplus eyeglasses and Standing Voice supplies sunglasses and monocular telescopes that visually impaired school children can use when classroom lessons are taught from the front of the room, not a book.
It's easy enough for them to hold something close to their faces when they are reading, but when they have to keep up with what's happening at the front of the classroom, they need help; they can't hold everything close to their faces. The goal is to integrate students with albinism into mainstream classroom settings as much as possible to gain all the educational benefits and social networking available.
This observation quickly became the inspiration for her next visit. The details are still swirling, but, for Susan Primo, the big picture is firmly in frame:
There's a lot of assistive technology out there that could help, and I'm going to go find it to put in their schools,
she said.
Things like video magnifiers or closed-circuit televisions and even virtual reality that can magnify text and project it onto a screen or into a headset where it's easier to read. And that's really important for middle and high school students because their books are generally not large print. And they can't hold everything close to their faces all the time. If they cannot keep up, they will become separated from their peers, left out. We can stop that.
We think her parents would be proud. We certainly are.
-Kathleen E. Moore