Personal Stories of Global Health Challenges

Shelly Xie shares her passion for science, art and humanity. Shelly illuminates personal stories of global health issues through sand animation. Enjoy this premiere of Shelly’s work created in collaboration with Pan American Health Organization (PAHO).

Script

Shelly Xie:

My name's Shelly and I'm a medical student at UT Southwestern. I'm very excited to be invited back to New England BioLabs, the award, the Passion in Science award in arts and creativity really holds a special place in my heart. So I'm currently pursuing to become a doctor. My inspiration actually came from volunteering as a young artist during high school in the hospital, through visiting various units in the hospital and drawing over 700 portraits for patients and families, I have encountered and witnessed overflowing joy of mothers while they're holding their newborns, and I have witnessed excitement off the elderly as they finally finding someone to chat with.

 

And at the same time I've also witnessed conflicted feelings of family members as they watch their loved ones suffering and battling the serious illnesses as well as the grief of mothers losing their children. Through this experience I learned the importance of hope and courage and the importance of meeting people and connecting with them on a deeper level. And also, as important, I learned the power of arts, to not only represent the objects and their physical beauty, but also they really have a power to convey a message, to heal patients and to be a medicine.

 

As an undergraduate at Stanford University, I continue to pursue and explore my passion in science and arts through academic and through outside activities. But I had it always wondered how I can better combine them together. And that opportunity came in my senior year when I joined a program called the Senior Reflection, which is a program designed for science majors to do capstone projects, combining their passions in science and the arts and the humanities.

 

While I was exploring my idea, I came across SAN animation. I was immediately mesmerized by the transparency of the images and the constant changing of the images with the light and music. And I thought this was the perfect medium to convey personal stories of diseases and health issues. So I created my first animation on a neglected tropical disease called schistosomiasis, which was what I was doing research on. And I created a personal story of a mother in Ghana and how she deal with the disease on a daily basis. After that, I began working with Pan American Health Organization to create more SAN animations on neglected tropical diseases that affect the American region.

 

And the goal was to show the human side of how people are affected and to show that we need a holistic approach to engage different sectors of society and government, to focus on research, to really improve the wealth, economic and social development of different societies. And I was able to present this at various national and international meetings in English and Spanish and was really touched by the positive feedback that I've gotten from both the science and the non science audiences. And I realized that through, by combining art with scientific topic, it was able to really engage and inspire the audience. And by making the scientific contents more approachable, it was able to really take away the intimidation that people had towards science and research, and something that would turn away people from these intimidating topics, and when the science should be as creative and experimental as how art is usually perceived.

 

And this creating of SAN animation has also inspired myself to take global health trips and medical trips to countryside Peru and Belize to actually interact with the natives, and to learn and experience first hand how they deal with the issues, health issues that they face every day. And I learned that although there are language barriers and cultural barriers, just by showing a simple gesture of caring, empathy and oftentimes by drawing pictures, I was able to really connect with the people there. And also I realized that as economic development, and social development, the health issues that were affecting these countries are transitioning from infectious diseases to non-communicable diseases. So that inspired me to really expand my work beyond just neglected tropical diseases.

 

So this year I worked with PAHO again, and we focused on sickle cell disease, which not only affects developing countries, but also developed countries. And this is actually a premiere of my work and I hope you really enjoy it. Thank you.

 

This is Alvita. A 25 year old woman living in the northern region of Jamaica. During infancy and early childhood, Alvita suffered from episodes of fever and swelling of the hands and feet every three to four months. She also experienced sepsis, a disseminated bacterial infection of the blood leading to several weeks of hospitalization. During her hospital stays, she must have her blood drawn multiple times to check for infection and guide her treatment, but it's a struggle each time to find a vein because her veins are collapsed due to her illness.

 

As Alvita grew up, the episodes of pain crises have become unbearable and she never knows when the next one will happen. She feels like she is being stabbed from the inside by alternating sharp and dull knives that target every part of her body. She screams, she moans, but nothing seems to console her. Back when she was a child, this illness gave her a stroke. Although it wasn't diagnosed until later, this stroke resulted in developmental delays including trouble learning to walk. Alvita has sickle cell disease. Sickle cell disease is a group of genetic disorders that can be inherited in one of two ways. It can be inherited homozygously when both parents contribute the sickle hemoglobin, or hemoglobin S gene. Alternatively, it can be inherited heterozygously. When the child inherits one hemoglobin S gene from one parent and another abnormal hemoglobin gene from the other parent.

 

The disease results in the production of the abnormal hemoglobin S, instead of the normal hemoglobin A. Certain triggers can make the abnormal hemoglobin S crystallize, changing the red cells from round to sickle shape. This change makes the red cells fragile and rigid. These red cells tend to be stickier, clump together, and lyse or break down quickly. These events results in blockage of the red blood vessels and lack of oxygen in the blood and tissues. The disease has many complications such as infections, stroke, damage to the spleen resulting in reduced immunity, leg ulcers, and lung problems. About 10% of all the people in Jamaica have the sickle cell trait, meaning that they have only inherited the gene from one parent and will usually not have any symptoms. When a couple with both having the sickle cell trait have a child, there's a 25% chance that the child will have the sickle cell disease with symptoms, and a 50% chance that the child will only carry the trait.

 

In Jamaica, sickle cell disease affects one in every 150 births. Sickle cell disease is most common in people living in or originating from Sub Saharan African, but it also affects people of Mediterranean, Caribbean, coasts of Latin America, Middle Eastern and Asian origin. The sickle cell gene is most common in areas where malaria is endemic, as the trait confers better survival if malaria is contracted. When Alvita's parents got married, they never knew about or discussed the risk of sickle cell disease. Alvita was diagnosed when she began having symptoms, and this was the first time that her parents learned of the condition. They were devastated.

 

They experienced every emotion from anger to denial, to guilt of being responsible for the suffering of their child. Days and nights in the hospital, watching their child go through her painful ordeals were emotionally draining. At school, Alvita always played catch up due to her crippling episodes and hospitalizations because factors like dehydration and changes in temperatures could trigger an episode. She was left out from sports and many activities. She felt alone and often misunderstood, because her pain was an invisible symptom and only she knew how it felt. As an adult interviewing for work, Alvita noticed how quickly her interviewers attitude changed once she mentioned her illness, so gradually she learned to hide it, but even now that she's employed, her illness makes things difficult.

 

Just like during her childhood, Alvita is hospitalized four to six times a year and on occasions, several weeks at a time. When she comes back to work, her co-workers resent her for her absence. She excels at her work and works very hard, but she still misses out on promotions due to the unpredictable nature of her illness. Now Alvita is about to get married and she wants to have children with her husband. Fortunately, much progress has been made in researching sickle cell disease. Her husband can be tested for the presence of sickle cell disease or trait, and both can receive counseling so that they can make informed decisions about childbearing. Once they decide to have children they can ensure their newborn gets screening, if access to prenatal screening is not an option. Since early diagnosis leads to early implementation of lifesaving measures for the infected infants.

 

Jamaica in particular was the first country in the world to have extensive newborn screening for sickle cell disease and has implemented near universal screenings as of December 2015. Also, when parents are aware of the condition, the infant can receive penicillin prophylaxis and vaccines to prevent infection, and they can learn about palpitation of the spleen to detect acute splenic sequestration. These simple interventions have been shown to improve survival significantly. Progress has been made in research, education and prevention, yet more efforts are needed in improving treatment modalities and affordability, as well as competence of healthcare workers in caring for sickle cell patients. Hydroxyurea is currently the only medication that is licensed to be used in sickle cell disease to especially reduce the incidents of painful crises and acute chest syndrome, but it has possible side effects and requires close monitoring of patients.

 

Some patients also receive blood transfusion to decrease the proportion of sickle red cells and improve oxygenation to the tissues. However, chronic transfusion is not available in Jamaica, due to limited blood supply. Cost and financial burden also limit patients' access to medication and treatment. Although now the National Health Fund provides some subsidization, the only available potential cure is bone marrow or stem cell transplantation, but this is an option very few can access and has tremendous risks and costs. Up to 5% of people undertaking these procedures may die as a consequence of the treatment and finding donors that match is very difficult. These are options that would not be available to Alvita in Jamaica.

 

As the life expectancy of people with sickle cell disease improves, the focus on early detection of complications becomes more important. Alvita is persevering through her illness. She has dreams and goals in life for herself and for her future children. With further advancements and research that enable all in need to receive effective therapies, the lives of those like Alvita may no longer need to be centered on sickle cell disease. They will be able to enjoy better and more productive lives.

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