Hemophilia: A tale of two carriers
Two mothers who carried and passed on their defective genes to their children share their story of perseverance over an incurable disease.
Mdm Norhana, 47, was diagnosed as a mild Type A hemophiliac at 15 years old as a result of persistent bleeding from a needle jab incident to her toes. She was treated, told to be careful and sent home.
Ten years later, she gave birth to twin boys. During her delivery, she suffered massive haemorrhage and had to be given fresh frozen plasma and fresh blood to supplement the factor concentrate, which was scarce at that time. Her twins are hemophiliacs.
As a hemophiliac patient, Mdm Norhana knew how to manage her boys. Unlike other parents with hemophilia, she did not restrict her boys’ activities. They were allowed to go to school and play with their friends as per any normal child. But, she had a list of do’s and don’ts for her boys. For example, they were not allowed to wear slippers or sandals until they were 5 years old, and they had to wear elbow and knee guards when they play outdoors.
“I never feel they have hemophilia because they lead such normal lives,” says Mdm Norhana. However, she concedes that she did take extra precautions around the house such as placing anti-slip mats in the toilets and placing the mattress on the floor with heavy padding around it to prevent any accidents.
She adds that she educates and counsels them as young as two years old, so they know how to protect and look after themselves. “My twins are 22 (years old) this year and they have girlfriends who know about their condition,” she says with a laugh. As for her youngest, 5 year old Afzar, she sighs and says, “he needs prophylaxis two times a week as he always gets knocked (referring to his active-ness).”
However, unlike Mdm Norhana, she was not aware of her condition until her fourth child had symptomatic swelling in his knees at 2 years old.
That’s when Mdm Norhana advised her sister to get the rest of the children tested for hemophilia. Despite a family history of hemophilia – her mother and aunt are carriers; Mdm Norharliza was unsuspecting as she had a son, followed by two daughters and then another son. Her elder son, 24, and second daughter, 17, were given a clean bill of health while her first daughter, 21, was diagnosed as a carrier. Her youngest child, Hazim Qayyum, 11, is a hemophiliac.
Unlike Mdm Norhana who is optimistic about her sons’ future, Mdm Norhaliza shares her worries over Hazim’s aloneness and her daughter’s marriage prospects in the near future. “I hope she will find a good boy who will understand her condition, but my biggest worry is Hazim,” she says, explaining that he only has a few friends because his peers don’t understand his condition.
One thing the sisters agree on is that attending events like the Asia Pacific Hemophilia Camp was a great help to them.
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