Patient Sharing | After Curing Thalassemia, Embarking on Endless Possibilities at 20

Zhou Zhou from Guangxi Province is a patient with severe β-thalassemia. After 16 years of blood transfusion, she and her family decided to undergo hematopoietic stem cell transplantation (HSCT). In 2021, the soon-to-be 17-year-old Zhou Zhou found the team led by Director Liao Jianyun. After two years of continuous iron chelation therapy, she underwent HSCT at Southern Chunfu (Children's) Institute of Hematology, Gobroad Medical (Hematology) Guangdong Research Center in 2023.

Nine months after the transplantation, her latest blood routine report shows a hemoglobin level of 131g/L—a very standard indicator. Just like her now strong body, she has completely broken free from the constraints of the thalassemia gene and burst with vigorous vitality.

Zhou Zhou's Profile

19 years old, severe β-thalassemia

· Diagnosed in 2004, started blood transfusion and iron chelation therapy; severe iron deposition in the heart and liver occurred in the later stage

· First visited Chunfu Institute in 2021

· 2021-2023: Iron chelation therapy and pre-transplant preparation

· Admitted to the transplant ward on July 20, 2023, underwent HLA-matched unrelated donor HSCT (from China Marrow Donor Program)

· Discharged from the transplant ward on August 30, 2023

· Currently, nearly 9 months after discharge, recovering well

At 16: Wanting to Live Like a Normal Person, Not Just Survive

On a daily basis, apart from being small, thin, and pale, Zhou Zhou did not look ill. However, the constant fatigue that "drained" her body always reminded her: she was a patient with severe β-thalassemia.

Back in 2004, three-month-old Zhou Zhou was taken to the hospital by her parents because she was pale and always listless. She was diagnosed with severe β-thalassemia. To survive, Zhou Zhou began a life of shuttling between home and the hospital for treatment.

"Every time I receive a blood transfusion, it's like refueling my body. Adding a little makes me feel light and energetic. But that fuel is quickly consumed by my body," she said with helplessness mixed with confusion when talking about blood transfusions.

Zhou Zhou Before Transplantation

One year, two years... sixteen years. With uninterrupted blood transfusions and iron chelation therapy, Zhou Zhou successfully "sustained her life." But as she grew older, the interval between blood transfusions continued to shorten. Long-term blood transfusions caused damage and atrophy to her blood vessels, and led to excessive iron deposition in her myocardium, liver, pancreas... Worse still, due to the shortage of blood supply, it was often difficult for her to get a blood transfusion even when her hemoglobin was significantly lower than the specified value for transfusion.

Guangxi is a high-incidence area for severe β-thalassemia. Zhou Zhou knows many friends who have relied on blood transfusion to maintain their lives for many years. "Many of them are only in their twenties, but their entire skin is black. Their livers and spleens are enlarged, all organs are swollen, and their heart rate is often so fast that it feels like it's going to explode. Sometimes I think maybe I won't see them again one day."

At 16, Zhou Zhou seemed to see her future in her friends, watching the disease erode their lives: "I want to live like a normal person, not just survive."

At 18: Deciding on Transplantation, Taking the First Step of Change

After deciding to undergo HSCT, Zhou Zhou and her mother came to Southern Chunfu (Children's) Institute of Hematology in 2021. "At that time, we didn't find a fully matched donor. We learned that Professor Li Chunfu's team's haploidentical transplantation program was already very mature, and many older and adult thalassemia patients had successfully completed HSCT, so we felt very hopeful."

Professor Li Chunfu's team conducted a detailed assessment based on past medical records and various examination reports, communicated with Zhou Zhou and her family about their transplantation wishes, and confirmed that haploidentical transplantation was feasible. However, at this time, Zhou Zhou had severe iron deposition in the heart and liver, with a ferritin concentration as high as 16,000μg/L. Her organs and blood vessels were also damaged to a certain extent, requiring pre-transplant conditioning.

Most fortunately, when the iron concentration in the heart and liver was successfully reduced to 5,000μg/L, she matched with a fully compatible unrelated donor from Hunan through the China Marrow Donor Program. Director Liao Jianyun's team formulated an HLA-matched unrelated donor HSCT plan for Zhou Zhou.

"I'm really lucky. Thank you so much to this caring volunteer and the staff who have been persistently helping me find a donor," Zhou Zhou has always felt that good luck finally smiled on her at the moment she decided to undergo transplantation.

In July 2023, accompanied by her mother, Zhou Zhou entered the transplant ward and took an important step to change her future.

Zhou Zhou cut her hair and took photos to commemorate before entering the transplant ward

Due to her relatively old age at the time of transplantation, her platelets remained at a low level after myeloablation, and Zhou Zhou developed obvious bleeding symptoms: massive hematemesis, bladder bleeding, epistaxis...

She and her mother were at a loss, never expecting so much blood to flow from her body. The doctors' professionalism and calmness effectively reassured them. After arranging blood transfusion and stabilizing her condition, Zhou Zhou began to record her physical data with her mother.

On the 15th day of persistently recording indicators, her blood cells finally began to rise slowly, and the bleeding symptoms improved significantly. Her immune and hematopoietic functions began to gradually rebuild.

At 20: The Trajectory of the Future, Extending Endless Possibilities

It has been more than 9 months since she was discharged from the transplant ward. Zhou Zhou, who is about to turn 20, describes her current life with just one word—incredible. No longer troubled by blood transfusions, her body is full of strength, and she feels free and light, just like her no longer heavy life.

"In the past, my goal was to get blood transfusions and survive. I didn't have the time or energy to think about other things." Rather than looking back on the past, Zhou Zhou prefers to look forward to the future. No longer chased by the disease to run forward tiredly, she can slow down and enjoy the scenery along the way.

Due to long-term leave due to health reasons, Zhou Zhou's studies have been intermittent, and she is still on leave from school. When it comes to her studies, Zhou Zhou is firm: "I think I still need to go back to school, finish high school, or go to a vocational high school, and choose a major I like."

Zhou Zhou received blessings when she was about to end follow-up and go home

Zhou Zhou believes that the trajectory of her future is no longer the terrible prediction she had at 16, but extends into endless possibilities: she will choose a major she likes, find a job she loves, and maybe one day, as Dr. Liao joked, have a sweet relationship.

Zhou Zhou and her mother also plan to clean up the first floor of their house when they go home, to provide accommodation for friends who come to the county for blood transfusion and iron chelation therapy, and offer a little help within their ability for their medical treatment.

Compared with friends who still rely on blood transfusion to maintain their lives, she feels very lucky. "After I go home, I will tell my friends that if they have the conditions, they should undergo transplantation as soon as possible." Even if they can't find a fully matched donor, even if they are not financially well-off, as long as they are willing to take this step, trying may lead to a solution and a brand-new start.