If living in a camp for the Internally Displaced Person IDP is already difficult for families, it is twice as hard for families with children with thalassemia or autism. These families face the high cost of treatment on one hand and the daily challenges of interacting with autism children on the other.
Iqbal Sulaiman, a mother of six children, two of whom have thalassemia (a 10-year-old girl and an eight-year-old boy), both in need of surgery but unable to afford it due to financial constraints.
Iqbal says they require at least 200,000 Iraqi dinars IQD (USD133) each month for treatment. Last month alone, she spent about 300,000 IQD on medication and doctor visits for her daughter.
Iqbal's family resides in Khanke camp in Duhok province, where there are over 20 children with thalassemia. "My husband is a daily-paid worker. The only support we have is social welfare for the two children, which is insufficient for their medical needs," she said. "The doctors have recommended surgery abroad for both of them, costing $80,000 each. We rely on the mercy of God."
The doctors have recommended surgery abroad for both of them, costing $80,000 each
According to a census conducted by the Thalassemia Association in Duhok Northern Province for the camps in 2023, there are over 340 thalassemia patients, but the number has decreased by half due to some families returning. There are 1,200 autistic cases in Duhok province, some of whom reside in IDP camps.
A study by the University of Cambridge showed autism is spreading in a large proportion in Iraq compared to the years preceding 2003 war, with 75 cases among each 10,000 children.
Autism is one of the disorders of a group of disorders called “autism spectrum disorders” that is diagnosed during infancy, usually before the child reaches the age of three years.
The World Health Organization WHO defines autism as “a group of complex disorders of brain development, and this comprehensive term deals with conditions such as autism, childhood disintegrative disorders, and Asperger syndrome. These disorders are characterized by the individual’s difficulties in interacting and communicating with society and their limitations.
"There are 20 children with thalassemia in the camp and six cases of autism," Khanke camp director Pir Alo Kachal informed KirkukNow.
"The Barzani Charity Foundation occasionally provides assistance, but overall, aid from organizations and government support for IDPs has declined. Any visiting organization or party is informed about the condition of these patients."
Khanke IDP camp, Duhok, June 2024. Ammar Aziz
The state fund is insufficient for families in tern of financial payment and healthcare service as well.
"Some patients receive 150,000 dinars monthly from the government, while others have not yet received their stipends," Muhedin Abdullah, president of the Thalassemia Patients Association in Duhok, told KirkukNow.
"Families with thalassemia and autism require assistance for medications and supplies. We will not hesitate to seek help from the government and organizations. We have done what we can and will continue to do so."
The government offers free daily training sessions for people with autism in government centers to enhance their social skills. However, the absence of government centers in the camps makes it challenging for displaced families to bring their children to Duhok.
Arian Ahmad, spokesman for the KRG Ministry of Labor and Social Affairs said studies indicate that early exposure to smartphones, tablets, environmental pollution, and heredity are factors behind autism.
Only one out of ten autistic children can receive rehabilitation services in the public centers of the Iraqi Kurdistan Region IKR. There are only six autism rehabilitation centers in the IKR, each of which accommodates between 15 and 20 children, but with over 4,000 children in need, says the Kurdistan Regional Government’s KRG Ministry of Labor and Social Affairs.
A bill should be passed in the Kurdistan Parliament to prevent people with this disease from getting married
Kamal Jabari, president of the Kurdistan Autism Association, previously stated to KirkukNow, "The situation of families with autistic children is dire. The cost of training autistic children in private centers costs between USD300-1200 which should be regulated by the ministry."
Thalassemia is an inherited blood disorder that causes your body to have less hemoglobin which enables red blood cells to carry oxygen and can cause anemia, leaving you fatigued, says Mayo Clinic.
“If you have mild thalassemia, you might not need treatment. But more severe forms might require regular blood transfusions. You can take steps to cope with fatigue, such as choosing a healthy diet and exercising regularly,” says the top-ranked American academic center.
According to Hassan Abdullah, an autism specialist and director of the Government Thalassemia Center in Duhok, the rise in thalassemia and autism among the displaced is attributed to having many children.
"There is a cultural aspect. Awareness should be raised to discourage marriages within this disease."
"A bill should be passed in the Kurdistan Parliament to prevent people with this disease from getting married, otherwise cases will sharply increase," he added.
