Mingqian (Shelly) Xie
Neglected
Art brought me into the world of medicine and science when I began volunteering seven years ago at a hospital back in Texas. What began as a day of portrait drawing became a new volunteer service for patients and families. From drawing over six hundred portraits of patients of all ages and with various illnesses, I realized that I could offer one small piece of comfort to patients in their struggles to find peace. I was most stricken by the realization that art has the power beyond representing an object and its physical beauty; it is filled with messages, and it is influential.
After coming to Stanford, I began conducting research in the Department of Urology at Stanford Medical School, where I encountered the neglected tropical disease—schistosomiasis—for the first time.
Schistosomiasis infects over 200 million people in 74 countries around the world, with the majority being children ages 5 to 14, and kills some 300,000 people annually [2, 5]. Schistosoma haematobium, the most prevalent schistosome worm in the world, causes infection in over 112 million people. Of these, more than 150,000 will die from urinary tract obstruction-induced kidney failure [3, 4]. In 2000, approximately 70 million individuals in Africa suffered from hematuria (bloody urine) every two weeks due to S. haematobium infection [4]. Other symptoms include bladder cancer, infertility, abdominal pain, diarrhea, and stunted growth in children. Less than 10% of people with schistosomiasis have been treated [1].
S. haematobium is commonly found in contaminated water of dams, ponds, and other stagnant bodies of water. Snails serve as the first host for the parasitic worm. During its larval stage, the parasite emerges from snails, lives in the water, and penetrates the intact skin of humans who come in contact with the water. Once larvae enter the body, they develop into pairs of male and female adult worms that live together in veins around the bladder up to 20 years [6]. The eggs released by the female worm can be trapped in body tissues causing severe reactions from the host’s immune system; the eggs, together with the immune cells, develop into tumors that cannot be easily eliminated. The only available treatment against schistosomiasis is praziquantel, a drug that attacks adult worms in the body, reduces the number of eggs, and treats 90 percent of damage caused by the infection. Regular treatment with praziquantel can help patients avoid developing severe diseases and maintain a lower number of worms in the body despite continuous reinfection. Even if offered only once a year, praziquantel can significantly improve the health of millions. Although the drug costs only 8 cents a pill, the price is still too expensive for African healthcare providers, and the amount of donated drugs is 10 to 20 times below the amount needed [2].
I was shocked by the impact of the disease and discovered how little people knew about the deadly worm that causes it. Compared to malaria, schistosomiasis is much less publicized, even though the two conditions rival one another in prevalence and socio-economic impact. In addition, even though I was learning more about schistosomiasis through a scientific lens by doing lab research, I had always been curious about the social impact of the disease and the experiences of people who live with it every day.
In the fall after joining the Senior Reflection, I discovered sand animation by coincidence through a Japanese television show. Right away, I was completely drawn by the art form. Having years of experience in visual arts, I always thought an artwork cannot be shown until it is completed. Therefore, I was shocked by the transparency of the drawing process, constant changes of the pictures, and the collaboration with music and light. Of course the fact that everything is drawn using sand and hands was also hard to believe. While I watched the performance, my long time curiosity to learn about people living with schistosomiasis came to mind.
Yes! That’s what I want to do! I want to make a sand animation performance on a personal story revolving schistosomiasis!
However, immediately I learned that not only is art on schistosomiasis extremely rare, sand animation is also a relatively new art form. One significant series of artworks and music on schistosomiasis was made by Basia Irland, Professor Emerita in the Department of Art and Art History at University of New Mexico. Irland created a series of scrolls on the life cycle of schistosome species using hand woven cloths from Ethiopia, Egypt, and Nepal and local spices such as indigo, saffron, and henna as paints [7]. She hung the scrolls on the boats and placed the cloths in the river to display her work and raise awareness in the local regions. She received a grant in interdisciplinary research from UNM and created Bilharzia Blues, a documentary film on schistosomiasis, and collaborated with traditional musicians to make educational songs in local languages.
Sand animation first appeared in films in late 1960s, created by Caroline Leaf, a Canadian filmmaker and animator [8]. It is also speculated that it began as an art form in China by traditional artist Yuxian Zhang who was inspired by Cloisonné—ancient technique for metal decoration. While the sand animation is still less prevalent in the United States, it is growing in popularity in some European and Asian countries, such as Hungary and China. Artists that excel in sand animation are Ilana Yahav and Joe Castillo. Ilana Yahav changes the lighting during some of her performances based on the content, and she also puts much attention on choosing the background music. Her performances focus on the ideas of peace, friendship, love and environment. Watching her performances allowed me to learn the simplicity and minimalism of sand animation and therefore the challenge and excitement that it brings to the artist as well as the audience. Joe Castillo is an award winning national storyteller who has founded World Story, Art Story, and Sand Story. Influenced by his extensive studies in Biblical Studies, many of Castillo’s works contain spiritual themes.
I received much inspiration from Irland, Yahav, and Castillo, but I have also struggled in the actual process of self learning everything from getting the materials to building a light table to drawing on sand (or even throwing the sand) to composing the background audio. What kept me going during the difficult times were my mentors’ passions in the disease and the arts as well as the similar experiences that other students in TSR shared with me. If I decide to try something completely new again, I admit that I will probably still be scared, but I know that I will have a little bit more confidence than before because of this year’s experience.
For the storyline of the performance, I interviewed Peter Ziniel, who is a Ph.D. student from Ghana, about how schistosomiasis affect people in Ghana and what can people do currently to treat or prevent the disease.
Q: When you lived in Ghana, did you live near people who had schistosomiasis?
A: Yes, but you cannot tell if people are infected by Schistosoma haematobium from appearances; you cannot see the symptoms. But if they say that they have bloody urine, you will know that they are infected. I haven’t seen someone with S. mansoni (another schistosome species) infection because without formal diagnosis, you will not know. There are many things that can cause someone to have bigger abdomen.
Q: Do you know what people could do if they carry the disease?
A: For those without immediate access to hospitals and doctors, they go to see the herbalist. The herbalists practice traditional medicine, and they use plant based medicine to treat schistosomiasis. But they treat it based on symptoms not lab diagnosis. For those who have access to modern medicine, it’s only when they go to the hospital and get real diagnosis through seeing the eggs in the stool, then they can get praziquantel.
Q: I read that even though praziquantel is 8 cents a dose, it is still too expensive for African health providers to prescribe to everyone. So I am wondering if the problem is mainly the lack of treatments or the lack of diagnosis.
A: I think it begins with the diagnosis because people who already know local, traditional doctors would go to them when they have bloody urine or bilharzia. If the traditional medicine works, that’s fine. If it doesn’t work, then they go to the hospital. At the hospital they might get the real lab diagnosis then get praziquantel. So you wouldn’t even start talking about praziquantel if people don’t get the lab diagnosis. Most of the people don’t get diagnosis if the traditional medicine works. The effect of traditional treatment is temporal so after a while, the symptom would return.
Q: So why do people still go to the traditional doctors?
A: It is just easier. They talk among themselves about whom to go see if they have bloody urine. They also advertise on the roadside with road signs. Their assumption is that once they have bloody urine, they have bilharzias or schistosomiasis, which is not always true. So they could get the wrong information and think that they have the right treatment.
Q: Can most people at least get the local treatment or that is even pretty difficult?
A: Most people have access to local treatment, but the treatment is not always right. The traditional medicine is trial and error; they try various herbs, not knowing what will work.
Q: How do people deal with having the disease daily?
A: It’s not that they have bloody urine all the time, but any time they do, it is accompanied by pain. You can see in their faces that they are in real pain. If they have cancer, they are in serious states. But if they don’t, you only see them suffer when they pass bloody urine and normal otherwise. Whenever they pass urine, they take a seat and look uncomfortable. It takes a while for them to recover.
Q: How long do the people have to be in the water to get infected?
A: From 15 minutes to 30 minutes. But people work for a long time, hours, in their fields, so there will be enough time for them to get infected.
Q: Do you know if there is any educational program?
A: Yes, there are, but people don’t believe you. They are stubborn so they don’t believe you. But even if they do, that’s their way of life. So unless you can provide an alternative for them, they will have to go back to those waters. Unless you can provide them with real toilets, they will keep going to the toilet in the bush and when it rains, the eggs will be washed into the ponds. Even if they know [about the disease], they will not be able to prevent it.
Q: What can we do to help?
A: Help people build real toilets and provide portable or piped water. This happens through the government. It is possible if the governments are willing to invest money in providing people with portable water and good sanitation.
From this interview and talking to my scientific mentor, I composed the following narration:
In the Volta Region of Ghana, Africa, everyone depends on water to survive.
Every day, with their babies on their backs and water pots on their heads, women walk to the lake to get water.
Women wash their clothes on the lakeshore, and children play and bathe in the water.
Farmers stand in their irrigated fields for hours every day, planting rice and caring for their crops.
This water is life, but it also hides a danger.
In the waters of the lake live snails, which are home to thousands of worm larvae called Schistosoma haematobium. These larvae have sensors that allow them to detect and penetrate into human skin.
Once in the body, larvae develop into adult male and female pairs and live in the veins surrounding the bladder for up to 20 years.
The females release thousands of eggs every day. Some of these eggs get trapped in body tissues like the bladder wall and cause tumors to form.
One day, a young mother will wake up in terrible pain and find blood in her urine.
She will go to see the herbalist in her village. That’s the normal thing to do—it’s easier and more accessible than a hospital. There will be no formal diagnosis, so she will only know her illness by its symptoms.
The herbal medicine may stop the bleeding. But her recovery will only be temporary.
The pain and bloody urine will return. As the pain becomes more severe, she won’t be able to move and do all the work that her family requires.
Maybe, if she is close enough, she will walk many miles to a hospital.
If she finally gets a diagnosis, she will learn the name of her illness. If she is lucky enough, she will get a dose of praziquantel. That may cure i—this time.
Will she get the disease again?
Yes.
Like most people, she might not know what makes her sick.
Or she might not believe that water is the cause of her illness.
Or she might know it too well.
But she cannot stop going to the lake and the ponds. They are the only source of water, of life.
One day she will see her child urinate blood and suffer from the same pain.
She will imagine the same life for her grandchildren, great grandchildren, great-great grandchildren. That is how life is, she may think, and always will be.
The people of Ghana are not alone.
Over 800 million people around the world come in contact with stagnant, contaminated water every day and are at risk of infection.
Of the over 200 million infected, the majority are children age 5 to 14.
Fewer than 10% are treated.
Schistosomiasis is a neglected disease with devastating global impact. In order to change that statement to “Schistosomiasis is a well recognized and successfully treated disease,” it is essential for everyone—those who live in regions with high infection and those who live thousands of miles away—to become better educated and to think about how we can change the current situation. Through creating a sand animation performance on schistosomiasis, I will be able to expand public’s knowledge of the art medium and the disease and contribute to the realm of art in collaboration with science. If my sand animation performance informs one more person, and that person takes my message home and takes action, I know that I would have succeeded in taking another step toward schistosomiasis elimination.
That was the last paragraph of my project proposal. After my performance, I was surprised by the number of people who came up to me and tell me how stricken they were by the art form as well as the disease. I realized then that I have really achieved my ultimate goal. I am very grateful for the opportunity that TSR has given me to explore my interests in art and science. It once again proved to me that art and science not only can go hand in hand, but they should in order for both fields to develop. It also proved to me that I will never be able to take a side between art and science.
References:
1. WHO website. Available at http://www.who.int/mediacentre/factsheets/fs115/en/index.html. Accessed 2011 Sept 27.
2. Burns, Melinda. 2010. Lifesaving drug praziquantel too expensive for Africa. Miller-McCune. <http://www.miller-mccune.com/health/lifesaving-drug-praziquantel-too-expensive-for-africa-23538/>.
3. Njoroge, Vincent K., et al. 2007. A comparative study of multiple versus single infection doses of Schistosoma haematobium in golden hamsters (Mesocricetus auratus). African Journal of Health Sciences. 14:187-194.
4. van der Werf, Marieke J ., et al. 2003. Quantification of clinical morbidity associated with schistosome infection in sub-Saharan Africa. Acta Tropica. 86: 125-139.
5. Schistosomiasis Control Program. The Carter Center
< http://www.cartercenter.org/resources/pdfs/factsheets/schistosomiasis-facts.pdf>. Accessed 2011 Nov 15.
6. Salem, S., et al. 2011. Successful control of schistosomiasis and the changing epidemiology of bladder cancer in Egypt. BJU Int. 107: 206-11.
7. Basia Irland—Water and Eco Artist. Ed. Basia Irland. 2010. 31 January 2012. <http://www.basiairland.com/recent-projects/scrolls.html>
8. Shank, Megan. “Drawing Lines in the Sand.” Newsweek International. . 12 November, 2009.