Book’s story of living with Beta Thalassemia

When Book was a baby, you’d never know anything was wrong. 

“I was healthy, chubby and strong — just like any other child,” he said. 

By age two, everything had changed. 

“I started having higher fevers and became pale and yellowish,” he recalls. 

Beta thalassemia, a genetic blood disorder, disrupts the production of healthy red blood cells, triggering chronic anemia and relentless fatigue. Back when Book was growing up, people just called it anemia or jaundice. Information about beta thalassemia wasn’t readily available. Monthly blood tests replaced playtime and school.

Thirty years ago, the internet wasn’t yet a resource, so Book’s family relied on the doctor’s guidance: blood tests, daily medicine and transfusions whenever blood concentration dropped. That meant missing school and activities other children enjoyed. Those moments were lost.

Later, Book learned a relative had faced similar symptoms — a reminder of how thalassemia can affect generations. 

Living with beta thalassemia meant constant fatigue. 

“When I was very sick just crossing an overpass or climbing stairs made me feel exhausted,” he said. 

Book’s youthful appearance and perceived frailty led to missed job opportunities, but support from family and friends uplifted him. “Even though there were impacts, I felt the people around me supported me very well.”

Curiosity and hope led Book to research new treatments.

Book’s message to fellow beta thalassemia patients is clear: “Don’t let yourself miss out on life’s good opportunities. You can have both a better life and better health.”