My Incredible Journey to Raise Awareness
by Andrew Shieh
Before I joined the thalassemia outreach team at Children’s Hospital and Research Center Oakland (CHRCO) in May 2012, I had never heard of thalassemia. After doing my own research online prior to my interview with Laurice Levine, I became motivated to unravel this genetic disorder even further. It wasn’t until after my initial meeting that I realized what a great opportunity this was for me to immerse myself in projects dedicated to raising awareness of this disorder. I contemplated how I could contribute to expanding our opportunities for outreach in the Bay Area. A week later, I received a packet of primary literature and pamphlets about thalassemia in the mail from Laurice and proceeded to educate myself through background literature. Little did I know that my journey had only begun.
My immediate involvement with the outreach team began when I reviewed the plethora of literature and proceeded to organize all the material in a concise and presentable manner for the rest of the team, including myself. I will be honest: it was an arduous task, simply because there was a lot of information. It wasn’t long before I realized that thalassemia is not merely a disorder—it creates a lifestyle composed of biological, social, and psychological elements. After two weeks of dedication, my project was complete. I constructed a poster that would follow the rest of the team to all future events. Aside from doing my own research to learn about the disease, I attended the Thalassemia Support Foundation conference at CHRCO in October 2012. This conference proved to be one of the most educational health conferences I have ever attended. The inspiring doctors, nutritionists, and patients shared insights unrivaled by any from reading research papers. The conference gave me new knowledge and stories to share at future events and has definitely shaped the trajectory of my involvement with this team.
As an ambitious outreach team member, I have strived to attend as many health fairs as I can to raise awareness in my community. One notable fair I attended was the 2012 Summer Health Fair hosted by the Vietnamese American Community Center of the East Bay. It was my first time presenting at a health fair, and I felt empowered to educate those of Vietnamese descent who had not heard of thalassemia before. Most people attended the fair for free health screenings and immunizations, so it felt rewarding to see people leave my display with smiles on their faces while holding the pamphlets and Band-Aids exhibited on my table. With the low prevalence of thalassemia in the Bay Area, it was especially gratifying to speak with individuals who knew thalassemia patients living in Vietnam. Another memorable health fair I attended was the USF Health Promotion Services Community Student Health Fair in March 2013. Among all the students and representatives from other organizations that I conversed with, five students identified themselves as carriers. In the Bay Area, approximately one out of eight people in the Asian community are carriers of thalassemia. Immediately, I felt that it was my responsibility to be proactive and encourage students who plan to have children to share that they have the trait with their future spouses. Outside of community wellness fairs, I have attended blood drives sponsored by Blood Centers of the Pacific and the American Red Cross both on and off the UC Berkeley campus. These events have given me an avenue to personally thank those who take time from their day to donate blood.
As a member of the thalassemia outreach team at CHRCO, my elation regarding our success cannot be expressed in words. We have managed to spread awareness beyond the community to a class of students at UC Berkeley. Currently, our class consists of dedicated students who are motivated to learn about thalassemia comprehensively and holistically. Instead of confining themselves to the classroom, the students have also become motivated to attend blood drives on campus to do outreach. A few students have also expressed great interest in joining members of the outreach team at future health fairs. Furthermore, the students are working closely with the entire team to coordinate a benefit concert in May 2013 at UC Berkeley to help raise awareness of thalassemia in the community. The students’ eagerness to get involved with events in the community and the benefit concert is a testament to how much the outreach program has evolved.
While everyone on the team, including me, can attest to the fact that we have definitely met many goals and stretched our boundaries, we all still have goals we want to achieve. Personally, I would like the outreach program to have a chance to present at middle schools and high schools. Such an opportunity would not only be another avenue to raise awareness, but it would demonstrate to students in the community that what they learn in school is applicable to their futures. This would also allow the outreach team as a whole to gain more exposure in the Bay Area. However, given that our current team is only a year young, I simply cannot ask for more. I have not only become an educator for my community, but a role model for children and students, reminding people to ignore stigmas and social barriers regarding chronic disorders. My accomplishments as an intern have certainly shaped me into the leader I am today. Words cannot express how grateful I am to be an intern for this program. I personally want to extend my thanks to everyone who has helped build the program into what it is today.
Originally from Cupertino, California, Andrew Shieh graduated from UC Berkeley in 2012 with a degree in Molecular and Cell Biology, concentrating in neurobiology. This summer, he hopes to ride some new roller coasters, learn new recipes, and go hiking weekly. Andrew enjoys playing and watching basketball, running, cooking, riding his longboard, and playing saxophone. As an undergraduate, he participated in numerous community service projects on campus, around the Bay Area, and even in Jamaica. Furthermore, he is passionate about teaching, which consequently has molded him into a mentor for his students. He also has extensive involvement in the medical field as a volunteer and a certified EMT. All of his previous experiences have helped him aspire to attend medical school in the future.