ID :
187648
Fri, 06/10/2011 - 07:30
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https://oananews.org//node/187648
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LIVING WITH HAEMOPHILIA
LIVING WITH HAEMOPHILIA
By Ali Imran Mohd Noordin
KUALA LUMPUR, June 10 (Bernama) -- Eleven-year old Nabil Firdaus plays football with his schoolmates, even though his father advises him against it.
Yet, Nabil, who enjoys goalkeeping, cannot resist playing the world's most popular game.
His father, 47-year old Mohd Nazri Abd Kadir, worries the game could endanger his son, who suffers from Haemophilia.
Haemophilia refers to a hereditary blood disorder in which a patient’s bleeding cannot be stemmed. This occurs due to the failure of the human blood-clotting mechanism, known as hemostasis.
The two risks to haemophiliacs are external wounds and bruises; and internal injuries to joints, muscles and soft tissue.
UNDERSTANDING HAEMOPHILIA
"This is a lifelong and life-threatening condition that currently has no cure," said Dr Faraizah Abdul Karim, president of the Haemophilia Society of Malaysia (HSM).
There are two types of Haemophilia, namely, Haemophilia A and Haemophilia B, and a majority of haemophiliacs are male.
Type A is more prevalent and affects one in 5,000 males, while Type B is rarer and affects one in 30,000 males.
Haemophilia is a genetic disorder, inherited from parents carrying the Haemophilia gene. However, the condition also develops through spontaneous mutation of cells.
Typically, females are the carrier of the gene while males develop the disease, said Dr Faraizah, deputy director of the National Blood Centre (PDN).
She said that as on 2010, PDN had a total of 1,188 haemophiliacs in its registry. Nabil is one of them.
LIVING WITH HAEMOPHILIA
Despite his condition, Nabil has a near-normal lifestyle, thanks to his family that has done everything possible to help manage his condition.
Nazri said the key elements in managing his son's condition were an
understanding of the problem, acceptance of the fact, and taking action.
Nazri made efforts to learn about Haemophilia, not only for his own
understanding but also to explain the disorder to others.
"It is important for parents to understand the disease," he said.
Acceptance of the disease is crucial in order to move on with life, and parents need to look ahead.
Additionally, parents need to create an action-plan after examining their children’s daily routine thoroughly. They need to introduce safety measures wherever possible.
For instance, parents must instruct their hemophiliac child on what to do in case of injury.
"When my son develops gum-bleed, he rushes to the canteen to buy ice and uses it to stop the bleeding," said Nazri. Nabil has also been told that if the ice fails to stem bleeding, he is to call home immediately.
Next, parents need to make other people involved in their child’s life, aware of required care. These could be babysitters, teachers and bus drivers.
Nazri stressed that teachers with haemophiliac students need to be made aware on the condition, and taught what to do in case of unexpected events.
This would ensure haemophiliac children are not compelled to participate in activities risky to them.
"It may get tiresome repeating the same thing to every new teacher, but this needs to be done," said Nazri.
Engaging with PDN and HSM is also useful. PDN assisted the family with information and training in injecting Nabil with clotting factor concentrates (CFC).
There are two types of CFC available in the market today – plasma-based and recombinant. Plasma-based CFC is manufactured from donated human blood, while recombinant CFC is manufactured through genetic engineering techniques.
Both kinds of CFC are used for injection into the haemophiliac’s
bloodstream.
Recently, Pfizer Malaysia developed two novel CFCs, namely, Xyntha
Antihemophilic Factor (Recombinant) Plasma/Albumin Free for Type A Haemophilia, and Benefix Coagulation Factor IX (Recombinant) for Type B Haemophilia.
MAKING LIFE BETTER FOR HAEMOPHILIACS
Most haemophiliacs learn to manage their condition and enjoy their lives as much as possible.
Thirty-year old Dr Rosyidi Rejab, a haemophiliac, said because he was discouraged from playing sports, he would spend his spare time studying.
As a doctor today, he is very grateful to his father for his support and courage in caring for him.
"Like Nabil, my father, too, took the effort to inform teachers about my disease and got me exemption from risky activities," said Rosyidi.
Nabil, too, aspires to become a doctor like Rosyidi one day.
"I want to help people, especially those with problems like me," he said.
-- BERNAMA
By Ali Imran Mohd Noordin
KUALA LUMPUR, June 10 (Bernama) -- Eleven-year old Nabil Firdaus plays football with his schoolmates, even though his father advises him against it.
Yet, Nabil, who enjoys goalkeeping, cannot resist playing the world's most popular game.
His father, 47-year old Mohd Nazri Abd Kadir, worries the game could endanger his son, who suffers from Haemophilia.
Haemophilia refers to a hereditary blood disorder in which a patient’s bleeding cannot be stemmed. This occurs due to the failure of the human blood-clotting mechanism, known as hemostasis.
The two risks to haemophiliacs are external wounds and bruises; and internal injuries to joints, muscles and soft tissue.
UNDERSTANDING HAEMOPHILIA
"This is a lifelong and life-threatening condition that currently has no cure," said Dr Faraizah Abdul Karim, president of the Haemophilia Society of Malaysia (HSM).
There are two types of Haemophilia, namely, Haemophilia A and Haemophilia B, and a majority of haemophiliacs are male.
Type A is more prevalent and affects one in 5,000 males, while Type B is rarer and affects one in 30,000 males.
Haemophilia is a genetic disorder, inherited from parents carrying the Haemophilia gene. However, the condition also develops through spontaneous mutation of cells.
Typically, females are the carrier of the gene while males develop the disease, said Dr Faraizah, deputy director of the National Blood Centre (PDN).
She said that as on 2010, PDN had a total of 1,188 haemophiliacs in its registry. Nabil is one of them.
LIVING WITH HAEMOPHILIA
Despite his condition, Nabil has a near-normal lifestyle, thanks to his family that has done everything possible to help manage his condition.
Nazri said the key elements in managing his son's condition were an
understanding of the problem, acceptance of the fact, and taking action.
Nazri made efforts to learn about Haemophilia, not only for his own
understanding but also to explain the disorder to others.
"It is important for parents to understand the disease," he said.
Acceptance of the disease is crucial in order to move on with life, and parents need to look ahead.
Additionally, parents need to create an action-plan after examining their children’s daily routine thoroughly. They need to introduce safety measures wherever possible.
For instance, parents must instruct their hemophiliac child on what to do in case of injury.
"When my son develops gum-bleed, he rushes to the canteen to buy ice and uses it to stop the bleeding," said Nazri. Nabil has also been told that if the ice fails to stem bleeding, he is to call home immediately.
Next, parents need to make other people involved in their child’s life, aware of required care. These could be babysitters, teachers and bus drivers.
Nazri stressed that teachers with haemophiliac students need to be made aware on the condition, and taught what to do in case of unexpected events.
This would ensure haemophiliac children are not compelled to participate in activities risky to them.
"It may get tiresome repeating the same thing to every new teacher, but this needs to be done," said Nazri.
Engaging with PDN and HSM is also useful. PDN assisted the family with information and training in injecting Nabil with clotting factor concentrates (CFC).
There are two types of CFC available in the market today – plasma-based and recombinant. Plasma-based CFC is manufactured from donated human blood, while recombinant CFC is manufactured through genetic engineering techniques.
Both kinds of CFC are used for injection into the haemophiliac’s
bloodstream.
Recently, Pfizer Malaysia developed two novel CFCs, namely, Xyntha
Antihemophilic Factor (Recombinant) Plasma/Albumin Free for Type A Haemophilia, and Benefix Coagulation Factor IX (Recombinant) for Type B Haemophilia.
MAKING LIFE BETTER FOR HAEMOPHILIACS
Most haemophiliacs learn to manage their condition and enjoy their lives as much as possible.
Thirty-year old Dr Rosyidi Rejab, a haemophiliac, said because he was discouraged from playing sports, he would spend his spare time studying.
As a doctor today, he is very grateful to his father for his support and courage in caring for him.
"Like Nabil, my father, too, took the effort to inform teachers about my disease and got me exemption from risky activities," said Rosyidi.
Nabil, too, aspires to become a doctor like Rosyidi one day.
"I want to help people, especially those with problems like me," he said.
-- BERNAMA
