World Thalassaemia Day 2008: Patients must strictly adhere to treatment

NST: KUALA LUMPUR: Mohamad Zanel Ibrahim has thalassaemia major. But the 22-year-old executive secretary of the Thalassaemia Association of Malaysia lives his life to the fullest.
Laughing, he says: "I get pulled over by the police all the time, especially at road blocks. They think I'm an underage school kid and ask me for my 'P' (provisional driving) licence. When I show them my driving licence, they give me a quizzical look."
Zanel has the short stature and looks common to thalassaemia patients.
His 19-year-old brother, Mohamad Zarul, and sister Siti Nur Atilla, 16, are carriers of the disease. Both his parents have the beta-thalassaemia gene, but only discovered it when Zanel started showing symptoms of the illness at six months old.
Zanel's mother told him that he used to vomit, had no appetite and often had fever. He was diagnosed with thalassaemia major at Penang Hospital and referred to Kuala Lumpur Hospital.
Thalassaemia major children are normal at birth, but develop anaemia during the first year of life. Growth failure, bone deformities, and enlarged liver and spleen are some of the problems that occur.
Zanel has been having regular blood transfusions since he was diagnosed.
"I had an enlarged spleen, and it was removed when I was 4. When I was 10, I was put on Desferal, the chelation therapy.
"My mother used to inject me in the stomach. I had to be on the therapy five times a week for 12 hours each time."
Zanel started injecting himself in Standard Five, carrying a small pump.
"I was and still am on penicillin, vitamin C and folic acid," said Zanel, who attended Sekolah Rendah Kebangsaan Kampung Baru and Sekolah Menengah Seri Titiwangsa.
He now goes for blood transfusions every two months and is taking the oral iron chelator, Exjade.
His next dream, he says, is to improve his income so he can marry his girlfriend.
He wants all thalassaemia major patients to know they can live life to the fullest if they strictly follow their treatment regimen, going for regular blood transfusions and doing the chelation therapy.