07 May 2013| last updated at 08:48PM
In conjunction with World Thalassaemia Day tomorrow, Olivia Miwil talks to a couple in rural Sabah about the difficulties in meeting the costs of treatment for three of their children
LIVING in a remote area makes it difficult for Usun Sangkir and his wife Theresa Angat to take their three children, who have the blood disorder thalassaemia, for treatment.
The Murut couple, who are rubber tappers, stay in Sook district which is about 40km from Keningau town in Sabah. Each hospital trip using public transport costs them RM30.
At times, the couple and the children have to stay overnight when the blood supply is not available on that scheduled day.
Fortunately, the family gets a monthly aid of RM240 from the state welfare department and they also get free treatment. Still, the family is struggling as the condition has greatly affected the quality of their lives.
When their eldest son, Affendy, 10, had recurrent coughs when he was just six months old, the couple did not suspect anything. Despite treatment, the condition persisted and worsened.
“A blood test confirmed that he lacked red blood cells,” Usun says, adding that the other two boys aged 4 and 7, also showed similar symptoms, prompting the hospital to run genetic testing on them too.
The tests confirmed that the boys have thalassaemia major. Following the results, doctors had suggested the couple undergo genetic testing. It was found that Usun and Theresa are both thalassaemia carriers. The couple have eight children, ranging from 2 to 10. The good news is that the other five children are healthy.
Thalassaemia is a genetic blood disorder that causes the body to make fewer healthy red blood cells and less haemoglobin.
Haemoglobin is an iron-rich protein in red blood cells which carries oxygen to all parts of the body and carbon dioxide to the lungs to be exhaled.
Thalassaemia patients need blood transfusions every three to four weeks. For Usun’s children, it’s every two weeks.
“The youngest usually will hide behind us and will scream when the needle is inserted into his vein. The two older boys are calmer as they have been through it for years. But they do complain of being bored; they have to stay in bed for hours for the transfusion,” said Usun.
FINANCIAL WORRY
FINANCIAL WORRY
Usun recalled that once, they delayed treatment due to their financial woes. It resulted in one of the children turning yellowish and becoming weak. They borrowed money to rush him to hospital. Since then, they have never missed an appointment.
They are among the 1,454 registered thalassaemia patients in Sabah as of March this year.
Likas Women and Children hospital director Dr Tan Bee Hwai says data showed that Sabah has the highest number of thalassaemia cases compared to other States in Malaysia.
The hospital has the highest registered number of patients (261), followed by Queen Elizabeth hospital (240), Duchess of Kent hospital (168), Kota Marudu hospital (126), Keningau hospital (118) and Ranau hospital (89).
The statistics indicate that the hospital had to work extra hard in ensuring adequate blood supplies, especially during the fasting month. On an average day, the hospital requires at least 60 bags of blood for patients.
To deliver a bag of about 450ml blood that is free from HIV, syphilis or Hepatitis A, B and C as well as other blood-related diseases costs about RM200.
Hospitals also have the responsibilities in ensuring regular blood recipients undergo chelation therapy to prevent side effects from the treatment.
The therapy will chemically remove excess iron which is part of donors’ blood components that will cause toxicity and damage other organs in thalassaemia patients.
A bone marrow transplant is the definitive treatment that can free thalassaemia patients from blood transfusions and chelation therapy.
Every year, five children are put on the waiting list to undergo this transplant in Kuala Lumpur.
The treatment will be available at the Likas hospital by year-end.
Dr Tan says the procedure, plus post-surgery medical management could cost up to RM35,000 per patient.
The hospital’s paediatric department head Datuk Dr Soo Thian Lian recently attributed the high prevalence of thalassaemia cases in Sabah to the consanguinity factor of inter-family marriages, causing defective genes to continue to multiply.
Dr Tan says with the high number of thalassaemia patients in Sabah, it is advisable for couples to undergo thalassaemia testing before they get married.
For expecting mothers, the hospital provides chorionic villus sampling and amniocentesis as prenatal diagnostic procedures to detect the severity of thalassaemia traits of foetuses.
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