Hamed Darwish's younger sister, Khowreya, was also a thalassaemia patient. She died after heart complications.
Emirati with thalassaemia wants to educate others
Hamed Abdulrahman Darwish has made it his mission to educate young adults about thalassaemia.
The Emirati was found to have the disease when he was only two years old, and requires blood transfusions every three weeks.
"No matter what we do, even if we take medication properly and on a regular basis, we are not 100 per cent fit," said Mr Darwish, 27. "Two or three days before my transfusion I'm so tired and my bones ache. We suffer but God gives us power to go on."
Mr Darwish's younger sister, Khowreya, was also a thalassaemia patient. She died after heart complications.
Before her death Khowreya wrote This Is My Life, a book describing her experience as a thalassaemia patient.
Mr Darwish hopes to have her book published and is working on projects that aim to increase awareness of the disorder and the importance of premarital screening.
One of his initiatives is an online competition in which school and university students can submit short films, surveys and research about the blood disorder.
"This makes the competition accessible to anyone at any time," Mr Darwish said. "And we want it to reach as many people as possible."
He said it was upsetting that some couples ignored warnings and risked having children who might have the disease.
"It is sad because they do not know what a patient feels," Mr Darwish said. "No one will know what the patient is going through except the patient himself."
This month an Emirati couple abandoned their disabled five-month-old child. They have since taken the baby back.
Mr Darwish said all parents had an obligation to love and care for their children, regardless of circumstances.
"We must have faith in what is written for us," he said.
"Here I am, born with thalassaemia and my parents didn't leave me.
"We now have the tools to make informed choices and to overcome our obstacles. But we must also take responsibility for our decisions."
Next month, the Dubai Thalassaemia Centre is planning to launch a psychology clinic to help children and their parents cope with genetic disorders, said Dr Fatheya Al Khaja, a thalassaemia specialist at the centre.
"To diagnose someone with a chronic disease is not a simple task," Dr Al Khaja said. "It's not easy to absorb, so you need psychological support for so many issues.
"If you tell parents that there is a risk they may have an affected child, you have to psychologically support them and their children."
Students can log on to www.uaethalassemia.org to participate in the What is Thalassaemia Competition. The deadline for submitting content is April 15.