Regional event held in Bogor to raise awareness of a silent killer

The 2010 Asia Pacific Hemophilia Camp was held in Bogor earlier this month with participants from Malaysia, Thailand, Taiwan and Indonesia.

The annual event is held to raise awareness on haemophilia, a hereditary genetic disorder that affects one in every 5,000-10,000 male births and reduces the body's ability to clot blood.

Brothers Nurfi Ibnu Athoillah, 13, and Muhammad Miftachus, 11, from Kediri, East Java, both haemophilia sufferers, were among the event's 23 participants.

"I feel sorry for my mother who has to accompany *me and Muhammad* to hospital in Surabaya *East Java* every week. But she never loses her spirit," he said.

"She always tells us to be patient and bear with all the shots."

Such camp is held by drug company Bayer annually. Last year the camp took place in Malaysia.

At a glance, the children participating at the camp, all boys bar one, looked like any other children, laughing and playing as they took part in the camp activities.

But for these kids, the slightest scratch can be life threatening, which would account for the number of medical staff present at each activity.

Nurfi looked frail during the camp and at times had to sit out of activities with swelling in his right knee caused by internal bleeding.

Like his mother, however, he never lost his spirit

"I'm glad I'm here at this camp. I have met new friends, not only from Indonesia, but also from Malaysia and other countries," he said.

"I just can't play with them because I have pain in my joint," he said while touching his right knee.

Both Nurfi and his brother said they wanted to be doctors so they could help others, like the doctors they often met in Surabaya, 120 kilometers from their hometown.

Haemophilia impairs the body's ability to control blood clotting and can cause prolonged or spontaneous bleeding in the joints, internal organs or muscles.

Without proper treatment, haemophilia can debilitate joints and cause permanent damage to certain organs or even death.

However, with the proper treatment available today, those suffering the disorder have a near normal quality of life.

The president of Indonesia Association of People with Haemophilia, Moeslichan, said there were two types of haemophilia. People with haemophilia A, called the classic haemophilia, have very little or no coagulating protein, called factor VIII. Those living with haemophilia B, making up 15 percent of all sufferers, have no or very little protein called factor IX.

Moeslichan said there were an estimated 20,000 people with haemophilia in Indonesia, but only 1,200 were recorded with the association.

Many went unrecorded because they died when they were very young.

"When people with haemophilia bleed, they don't experience faster bleeding but rather prolonged bleeding. How long they bleed depends on the severity of their condition," Moeslichan said.

Among those with severe conditions, bleeding often happens spontaneously without obvious cause. Those with moderate haemophilia only show symptoms when they're injured, while the mildest cases might not show symptoms until they undergo surgery or have severe wounds.

Mostly, however, they suffer internal bleeding in major joints like knees, elbows and wrists.

The head of Bayer Schering Pharma Indonesia, Allen Doumit, said the company had dedicated research to find drugs that could enhance the quality of life of those with the disorder.

"We also try to help those the developing countries by cooperating with the governments," he said.

In Indonesia Bayer provided the treatment through Askes and Jamkesmas.

One mother of two boys at the camp, Pipit Syafitri, 40, from Serang, Banten, said she was thankful for the government program and subsidies that have greatly lowered the cost of treatment for her family.

"I'm a carrier and my two boys have haemophilia. Ten years ago I was desperate because, to treat my son, I had to sell my car, house and land," she said.

She said she is now part of the Jamkesmas scheme and she and her sons travel to Jakarta once a week for treatment at Cipto Mangunkusumo General Hospital.

"I never asked to be a carrier. I also never imagined that my sons would moan in pain every time they bled. But this is the fate we have to deal with. And I do my best to help my sons deal with the condition by routinely getting treatment," Pipit said.