- Title: WEST BANK: Palestinian families battle with genetic disease Thalassemia
- Date: 5th February 2009
- Summary: (SOUNDBITE) (Arabic) FARDOUS TURKMAN, THREE OF TWO THALASSEMIA PATIENTS, SAYING: "I suffered a lot after finding out that my first-born daughter carries this sickness. That caused me a lot of pain and psychological distress. The children have become very irritable because of all the blood transfusions. They lose their temper whenever you tell them anything and they get very bored whenever they come to the hospital. They don't like coming here."
- Embargoed: 20th February 2009 12:00
- Topics: Health
- Reuters ID: LVADA4THEVDJBO0NGLAQ3AU3YMXP
- Story Text: Experts estimate that around 100,000 Palestinians suffer from the genetic blood disease Thalassemia, which can be fatal without treatment.
The Turkmen family from the West Bank town of Jenin have been struggling for years to raise two children with the illness.
If both parents carry the trait for Thalassemia, there is a 25 percent chance that their child will be born with the disease. Thalassemia is linked to a lack or absence of those genes responsible for producing haemoglobin, which has serious consequences. Those born with the disease develop symptoms linked to anaemia, vomiting, loss of appetite, difficulty sleeping and sallow skin. If untreated, Thalassemia can be lethal.
Hassan and Fardous Turkman did not know that they were carriers of the Thalassemia "Beta" gene until two of their four children were diagnosed with the condition.
13-year-old Aya and 10-year-old Muhammad both suffer from the disease and have to be administered regular blood transfusions.
"After we got married, my wife and I discovered that we were both recessive carriers of Thalassemia. After we had our first daughter Aya, She was diagnosed with Thalassemia. Since then we give her blood transfusions every 3 months," explained Hassan Turkman.
Blood transfusions are the most common method of treating the disease.
Patients are given a dose of red blood cells with normal levels of haemoglobin. The treatment has to be repeated at least every three months, since red blood cells survive for up to 120 days.
Hassan and Fardous Turkman donate their own blood for their children's transfusions. Fardous, who is a mother of four, explained that seeing her children go through the process was emotionally draining.
"I suffered a lot after finding out that my first-born daughter carries this sickness. That caused me a lot of pain and psychological distress. The children have become very irritable because of all the blood transfusions. They lose their temper whenever you tell them anything and they get very bored whenever they come to the hospital. They don't like coming here," she said.
Although Thalassemia can occur in most societies, it is typically found in the Mediterranean, Africa and Southeast Asia. Experts explain that there is a co-relation between areas with high levels of endemic malaria and the appearance of the genetic disorder.
Husni Bashir, who heads the Thalassemia unit at Jenin hospital, explained that the incidence among Palestinians was particularly high.
"Some 3.5 to 4 percent of the Palestinian population are carrier of the Thalassemia gene, this is a large proportion compared to countries in other parts of the world. If the total Palestinian population in the West Bank and Gaza is 4 million, there are some 100,000 Thalassemia carriers,"
Aya and Muhammad struggle with the pain of regular visits to the hospital for blood transfusions and the boredom of missing school and friends.
"When they put needles in my stomach, I can't play with my friends or do my homework. I feel pain in my stomach," Muhammad said.
The Ministry of Health of the Palestinian Authority now orders couples to take blood tests ahead of the marriage in order to reduce cases of Thalassemia.
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