For most of his 43 years, UAE citizen Fahad Al Hashimi’s life revolved around blood.
Every three weeks, he needed a transfusion. To manage the iron that accumulated in his body, he also relied on iron-chelation treatment, at times spending hours connected to a pump. He learned to organise his life around his illness.
A transfusion could bring back his energy and make him feel as though the air was full of oxygen. But by the second week, his energy would begin to fall. By the third, even climbing a flight of stairs could leave him exhausted. “I would feel like there was no oxygen in the air,” he recalled.
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What is Thalassemia?
Thalassemia, an inherited blood disorder that prevents the body from producing enough healthy haemoglobin to carry oxygen, had been part of Fahad’s life since infancy. Yet it never stopped him from pursuing the life he wanted.
He earned two university qualifications, built a career in government as a financial auditor and started a family. Today, he is a father of four.
Still, living with the condition meant constantly working around its limitations. Fahad loved exercising and travelling, but both had to fit around his treatment schedule. Before planning a trip or an activity, he would calculate when he had last received blood and how much energy he could expect to have before his next transfusion.
Even the small pump used for his treatment became an unavoidable part of daily life. “It is annoying,” he said. “There is a needle in your body, and you are going out and doing activities, while people think there is nothing wrong with you.”
For years, a bone marrow transplant was the conventional option that could potentially cure his thalassemia. But finding a suitable donor proved difficult.
Fahad underwent testing with members of his family, including his parents and siblings, searching for a fully matched donor. None proved to be the ideal match.
A transplant from a less-than-perfect match was possible, but Fahad knew that transplantation could carry serious complications.
Then he heard about another possibility.
Gene therapy using CRISPR gene-editing technology
At a conference organised by the Emirates Thalassemia Society in Dubai, he met doctors connected to Yas Clinics. They told him about a new approach — gene therapy using CRISPR gene-editing technology.
He went to Yas Clinics for extensive medical assessments. There was one complication — the pivotal clinical trial for the treatment had involved patients aged up to 35, while Fahad was already in his early forties.
Nevertheless, doctors determined that he was eligible for treatment. For him, that changed everything.
The treatment, however, was far from easy.
Fahad spent about 40 days in hospital isolation. Before receiving his modified stem cells, he underwent several days of chemotherapy, which weakened his immune system. Eating and swallowing became difficult, and even the taste of food changed.
But he kept his focus on what came next — the possibility of finally escaping a disease he had lived with for more than four decades.
His own stem cells had been collected, genetically modified and then returned to his body.
The hardest part was waiting for the treatment to take hold.
After leaving hospital, he continued to require close monitoring and precautions while his immune system recovered.
Then came a result he had spent his life hoping to see.
About a month after treatment, his tests showed that his blood counts were beginning to rise on their own.
He remembered crying after seeing the result. “For me, it was a dream of my life to see that my body could produce blood,” he said.
The change was gradual, but by around two and a half to three months after the procedure, he felt that his life had fundamentally changed.
Before treatment, exercise was possible after a transfusion, but the boost in energy was temporary. As his haemoglobin levels fell, so did his ability to stay active.
Now, he said, he can go to the gym whenever he wants, ride his bicycle and run.
“I can travel whenever I want,” he said, noting that now he can go on trips without arranging his life around the next transfusion.
A life no longer ruled by transfusions
For someone who has never lived according to a medical timetable, that freedom may be difficult to imagine. For Fahad, it means being able to make plans without first checking when he last received blood or calculating when his energy might begin to disappear.
It also changed the way he thinks about his own identity.
Living with thalassemia often meant explaining his condition to people who did not understand it. Some assumed he had cancer, while others struggled to understand why someone who appeared healthy needed regular transfusions.
After more than four decades of treatment, he has gained something that once seemed almost unimaginable: the freedom to make plans without arranging his life around a transfusion.
His experience has also shaped the message he wants to share with others living with thalassemia. He encourages patients to look after their health, manage their iron levels, stay active where possible and discuss emerging treatment options with their doctors.
He is equally clear that gene therapy is not an easy journey. Chemotherapy and recovery place considerable demands on the body, making a patient’s health before treatment an important consideration.
Still, he believes his experience shows how quickly medicine is advancing.
“Science is always developing,” he said, urging other patients to continue asking their doctors about emerging options.
For Fahad, the progress is measured in everyday moments rather than laboratory results or medical statistics.
It is being able to wake up and decide to exercise. It is getting on a bicycle. It is booking a trip without first arranging a transfusion.
And after more than four decades of living with thalassemia, it is knowing that his body can now produce the blood he once depended on others to provide.
Source: Khaleej Times