Thalassemia and Taiwan: A Journey of Discovery

During my sophomore year at Occidental College in Los Angeles, I began contemplating applying for a study abroad program for the first semester of my junior year.

As a multiracial Taiwanese-American, deeply connected to my Taiwanese heritage, I had attended a Confucius Institute summer camp, taken Mandarin Chinese classes in high school, and pursued double majors in Chinese Studies and East Asian Studies at Occidental College.

However, I faced a unique challenge. I have alpha thalassaemia major, which posed complications for extended stays abroad due to my treatment requirements of regular blood transfusions. To manage my blood disorder, I would need to find a new hematologist and hospital, all while navigating healthcare in a foreign country and in my second language.

Despite these challenges, I was determined to study abroad in Taiwan. I discussed my aspirations with my medical teams at Boston Children’s Hospital and the Children’s Hospital of Los Angeles. They helped me connect with a hematologist in Taiwan who was experienced in treating thalassemia patients and could provide local support. Through this process, I gained valuable contacts in Taiwan who assisted me in scheduling blood transfusions and acquiring necessary chelation medication.

My study abroad experience in Taiwan was incredibly fulfilling. I continued my treatments smoothly, receiving regular blood transfusions at a local hospital in Taipei. I cherished my time in Taiwan, feeling empowered by my ability to manage my healthcare independently. I returned to the US more confident than before.

I have since returned to Taiwan, where I have been living for over two years, recently completing a master’s degree program at a local university. Due to the pandemic, I switched hospitals to Taichung, where I receive regular blood transfusions from a team whom I deeply trust and respect. I have attended two thalassaemia conferences here in Taiwan, presenting at one of them. I am planning on staying in Taiwan long-term and pursuing work opportunities here. Fortunately, being enrolled in the National Health Insurance in Taiwan has made my blood transfusions very affordable.

Through this journey, I have learned that despite the challenges, individuals with thalassaemia can thrive. With the support of evolving treatments, strong networks, and determination, we patients can pursue our dreams in ways that we never could before. In my twenty-five years so far, I’ve taken a variety of new chelation medications, each better than the last, and have witnessed new gene therapies start to appear.

The future looks bright for us thalassaemia patients, and I can’t wait to see it happen!

Tobias Ho Larkin 何子麒