Poor knowledge cost hemophiliacs lives<\/p>\n
JAKARTA (JP): Thousands of hemophiliacs in Indonesia remain
\nuntreated and eventually die because knowledge of the disease
\namong Indonesian people remains very poor, specialists in Cipto
\nMangunkusumo General Hospital (RSCM) revealed on Friday.<\/p>\n
Hemophilia is an inherited bleeding disorder which stems from
\na defect in blood clotting, resulting in much longer bleeding in
\nits sufferers.<\/p>\n
The disease inflicts one out of 10,000 people in the world and
\nit affects males almost exclusively as women with the disease
\npass it on through their X chromosome.<\/p>\n
Unfortunately, statistics show that 80 percent of hemophiliacs
\naround the world do not have enough knowledge of how to treat the
\ndisease.<\/p>\n
That trend is also found in this country.<\/p>\n
Statistically, Indonesia is estimated to have around 210,000
\nhemophiliacs out of its 210 million population. But in 1995,
\nthere were only 288 recorded cases all over the country.<\/p>\n
\"In Jakarta for example, with 10 million population, from an
\nepidemiological point of view there should be about 1,000
\nhemophiliacs. But in RSCM, there are only 170 patients
\nregistered,\" the hospital's clinical pathologist, Rahajuningsih
\nSetiabudy, said on the sidelines of a seminar on hemophilia.<\/p>\n
This, she said, is probably due to lack of information and
\nknowledge about the disease.<\/p>\n
\"Some may be afflicted with severe hemophilia and die in early
\nchildhood, while others are mild hemophiliacs who are not easily
\ndiagnosed,\" Rahajuningsih added.<\/p>\n
Hemophilia is divided into Hemophilia A and B with each class
\nalso divided into mild, moderate and severe categories.<\/p>\n
Hemophilia A is the most common form and is due to a
\ndeficiency of liver glucoprotein clotting factor called Factor
\nVIII (FVIII).<\/p>\n
The latter is caused by a deficiency of Factor IX (FIX), a
\nclotting factor which is also produced in the liver. Man needs
\nVitamin K to produce FIX.<\/p>\n
The normal range of both factors is 50 percent to 100 percent.<\/p>\n
The range for hemophiliacs is 6 percent to 30 percent for the
\nmild one, between 1 percent to 5 percent for the moderate and
\nless than 1 percent for the severe case.<\/p>\n
According to Rahajuningsih, bleeding in mild level hemophilia
\nis usually associated with major injuries, surgical operations or
\ntooth extractions.<\/p>\n
\"Diagnosis may not be made until adulthood when unexplained
\nbleeding may follow one of the above events. That's why the
\ndisease is undetected,\" she said.<\/p>\n
Bleeding occurs in moderate hemophilia after minor injuries as
\nwell as operations and tooth extraction.<\/p>\n
While in severe hemophiliacs, bleeding into joints, muscles
\nand other tissues occurs with minimal or no obvious injury
\n(spontaneous hemorrhage) as well as with surgery and tooth
\nextraction.<\/p>\n
\"The symptom can be detected when an infant starts to crawl.
\nBut many parents are clueless about this. They wonder why their
\nchild has many bruises,\" Rahajuningsih said.<\/p>\n
Many parents end up sending their children to a masseur, she
\nadded, instead of a doctor.<\/p>\n
Unfortunately, cure remains unavailable. Medicine is used to
\ntreat factor deficiency but it is relatively expensive, she said.<\/p>\n
Injected medicine Koate High Purity (Koate HP), which consists
\nof FVIII, for example, costs between Rp 817,500 (US$91) to Rp 1.8
\nmillion ($200) per vial.<\/p>\n
\"It can cost a patient several hundred thousands rupiahs for
\nan injection. While he or she should get it at least once a
\nweek,\" Rahajuningsih said.<\/p>\n
Pediatrician Djajadiman Gatot said that a hemophiliac can live
\na normal life with treatment.<\/p>\n
\"Too bad, private health insurance has yet to cover insurance
\nfor patients with inherited disease. While it can really ease the
\npatients' financial burden,\" he said. (hdn)<\/p>",
"url": "https:\/\/jawawa.id\/newsitem\/poor-knowledge-cost-hemophiliacs-lives-1447893297",
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