Yuetong’s story
In his youth, Yuetong was diagnosed with beta thalassemia, a blood disorder that impairs oxygen circulation in the body. He has relied on red blood cell transfusions throughout his life, but due to blood shortages, these transfusions are reserved for emergencies. This has left Yuetong with low energy and a worsening condition. Following an additional complication in his diagnosis, Yuetong continues to fight his disease. He does his best to not let it get in the way of pursuing his passion for photography, and he and his wife are excited about new experiences like traveling and starting a family.
I was diagnosed with beta thalassemia at the age of one. At the time, Hematopoietic Stem Cell Transplantation (HSCT) was immature and was considered as high risk. We have no choice but to take lifelong RBC transfusion and Iron Chelation Therapy.
It wasn’t easy. Continuing the treatment over the long term was quite challenging.
Due to the blood shortage, getting RBC transfusions is no cakewalk. It’s not like I can top up whenever I need it. The application for RBC transfusions is only accepted when the hemoglobin level is below 60 g/L. Last year I was diagnosed with pulmonary hypertension a complication of beta thalassemia. It was hard for me to even get out bed. I felt like my life would come to an end in five years.
When I feel down, I like to go out with my camera and take pictures. My energy level is barely half the strength of a normal person. There are so many simple things that I just couldn’t do. My wife came into my life and has always been there to support me. She’s like a ray of sunshine that makes my worries disappear.
It’s tough seeing him sick. We feel anxious and helpless but as long as there’s at least a glimmer of hope. We are willing to try whatever it takes.
The new innovative drug was the only one I could rely on. I took the treatment every three weeks. My blood transfusions burden has decreased compared to the past. Three months later, my hemoglobin level was still above 90 g/L. I felt like my quality of life came back. At that time, I had to buy the drug at the full price it really put a strain on my finances. So I stopped getting the treatment. But after the drug was listed on the National Reimbursement Drug List, I went back on it. Now I can do the housework and walk around like a normal person again. It was like I was given a new lease on life.
Science opened up a new world for us and brings so many new opportunities in life.
Now, we can try more things that we could only dream about in the past. Traveling to new places, for example or trying new foods. We are even thinking about raising a child. To those working on development of innovative medicines, thank you for all your dedications and efforts. It is you to make the life of thalassemia patients different, to empower us to find new hope and new ways to fight the disease. Please keep foraging ahead and continue to push the boundaries of science.
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