Financial support needed to help hemophiliacs live a normal life<\/p>\n
JAKARTA (JP): Widya was shocked to see her 11-month-old son
\nEric, who cut his lips after making several unsuccessful attempts
\nto stand on his feet, hemorrhaging.<\/p>\n
\"He was bleeding profusely, like a running tap. I panicked and
\nrushed him to hospital where he was given blood transfusion,\" she
\nsaid. An official at the hospital referred her to Cipto
\nMangunkusumo General Hospital (RSCM) to do a blood test for her
\nson.<\/p>\n
\"My heart sank when the doctor at RSCM said that Eric had
\nhemophilia. A disease which requires expensive and lifelong
\ntreatment,\" she said.<\/p>\n
This happened 11 years ago and today Eric is no different from
\nother children.<\/p>\n
Eric is among the thousands of hemophiliacs in the country.
\nThere is no accurate data on the number of sufferers of this
\nfatal disease.<\/p>\n
The Indonesian Hemophilia Foundation predicted that one in
\n10,000 males is a hemophiliac, meaning there are about 18,000
\nhemophiliacs in the country; some 1,000 of whom are in Jakarta.<\/p>\n
\"Many parents don't take their children to doctors for
\nexamination, making it difficult to monitor the number of
\nhemophiliacs and fatalities,\" said Moeslichan, who is chairman of
\nthe RSCM's Hemophilia Comprehensive Care Team.<\/p>\n
RSCM is currently treating 170 hemophiliacs.<\/p>\n
He said with proper treatment, hemophiliacs could live like
\nnormal people and have the same life expectancy.<\/p>\n
Hemophilia is an inherited blood disorder due to a deficiency
\nin blood clotting factors. It affects males almost exclusively.
\nThe disease is characterized by the delayed clotting of the
\nblood, making it difficult to even control bleeding due to a
\nminor injury.<\/p>\n
\"Most parents only become aware of this health problem when
\ntheir sons are circumcised,\" he said.<\/p>\n
There are two types of hemophilia. The most common is
\nhemophilia A, which is caused by a deficiency of Factor VIII, and
\nhemophilia B, which is due to the absence of Factor IX. Both
\nfactors are required for normal blood clotting.<\/p>\n
This sex-linked disease is caused by a defective gene on the X
\nchromosome. So males, with XY chromosomes, who inherit an X
\nchromosome with the defective gene will likely develop the
\ndisease, while females, with XX chromosomes, would become
\ncarriers and could transfer the gene to their offspring. Very
\nrarely, a female with hemophilia is born, even if her mother is a
\ncarrier and her father a hemophiliac.<\/p>\n
However, Moeslichan also pointed out that gene mutation due to
\nviral infection, radiation and pollution could trigger
\nhemophilia.<\/p>\n
Symptoms of hemophilia include bruises, spontaneous bleeding,
\nand bleeding into joints accompanied by pain and swelling.
\nUntreated injuries can lead to bleeding to death or decaying of
\ntissues around the wound, and bleeding into joints can cause
\nparalysis.<\/p>\n
Comprehensive health check<\/p>\n
Moeslichan said Factor VIII and Factor IX could be supplied
\nthrough intravenous injections of cryoprecipitate or Factor VIII,
\nwhich is concentrated and extracted from blood donated to
\nhospitals.<\/p>\n
Doctors will administer the first few injections, but will
\nlater teach parents or the patients how to do it themselves at
\nhome.<\/p>\n
As for prevention, Moeslichan stressed the importance of a
\ncomprehensive health check prior to marriage, and antenatal
\ntests, to help detect irregularities, during the 12th week of
\npregnancy.<\/p>\n
\"If the fetus is diagnosed with hemophilia, the couple can
\ndecide whether to abort it,\" he said.<\/p>\n
People with hemophilia are advised to cycle and swim to
\nimprove their stamina, and strengthen their muscles and joints. A
\npatient is advised to wear a tag identifying him as a hemophiliac
\nand his blood type to enable proper treatment during an
\nemergency.<\/p>\n
The doctor, who is also a professor at the University of
\nIndonesia's School of Medicine, admitted that treatment for
\nhemophilia was very expensive and sufferers would have to rely on
\nit for the rest of their lives.<\/p>\n
For routine treatment, adult hemophiliacs need some 24 bags of
\ncryoprecipitate every week, each worth Rp 41,000. There is also
\nan on-demand treatment for emergency cases, such as injuries with
\nprolonged bleeding or for tooth extraction.<\/p>\n
Concerns over funds was also aired by chairman of the
\nIndonesian Hemophilia Foundation Erlan Taralan.<\/p>\n
The foundation requires some 40,000 bags of cryoprecipitate
\nannually for which it can only cover 15 percent of the total
\ncost. Thirty percent is covered with funds derived from the
\nSocial Safety Net (JPS) and the remaining by RSCM and other
\ninstitutions.<\/p>\n
\"We are turning to the public for funds because next year
\nthere will be no allocation from JPS,\" he said.<\/p>\n
If volunteers donate their blood, why are patients burdened
\nwith the cost? A staff at RSCM's Blood Transfusion Division, Agi
\nHerlina, said the cost of each bag was set to cover blood
\nmanagement, which includes tests, donation, processing, handling
\nand distribution.<\/p>\n
-- Maria Endah Hulupi<\/p>", "url": "https:\/\/jawawa.id\/newsitem\/financial-support-needed-to-help-hemophiliacs-live-a-normal-life-1447893297", "image": "" }, "sponsor": "Okusi Associates", "sponsor_url": "https:\/\/okusiassociates.com" }