Frag­ile as glass, strong as iron

Philippine Daily Inquirer - - OPINION - RINA JIMENEZ-DAVID

It’s like liv­ing with a body made of glass,” de­clares John Fran­cis Sar­menta, an ad­vo­cate with the He­mo­philia As­so­ci­a­tion of the Philip­pines for Love and Ser­vice (Hap­los) Foun­da­tion and him­self a he­mo­phil­iac. “You feel fear ev­ery day,” adds Maria Lour­des For­malejo, pres­i­dent of Hap­los and the mother of a young man liv­ing with the same dis­ease. “Ev­ery morn­ing you wake up dread­ing that some­thing may have hap­pened to him dur­ing the night that could cause se­ri­ous bleed­ing.” And on most days, she adds, she must pay at­ten­tion to ev­ery lit­tle slip or stum­ble, be on the look­out for the mer­est bruise or swelling, and, I can imag­ine, bite her tongue when her son ven­tures out on his own, torn be­tween the de­sire to let him live a “nor­mal” life and pro­tect him from harm.

This is what it’s like to care for a he­mo­phil­iac, or be a he­mo­phil­iac: tread­ing the frag­ile-as-glass bal­ance be­tween the de­sire to ex­plore ev­ery­thing that life has to of­fer and yet keep within cer­tain bounds to avoid fa­tal con­se­quences.

He­mo­philia, says Dr. Flerida Her­nan­dez, trea­surer of Hap­los and a hep­a­tol­o­gist, or spe­cial­ist in blood dis­or­ders, is a con­di­tion caused by the lack of a clot­ting fac­tor that pre­vents the for­ma­tion of blood clots and could lead to pro­longed bleed­ing. Though not fa­tal, bleed­ing for long pe­ri­ods could re­sult in bone and mus­cle de­te­ri­o­ra­tion, and if it oc­curs in ar­eas like the brain, re­sult in death.

Strangely enough, though he­mo­philia world­wide is be­lieved to af­fect one in ev­ery 10,000 peo­ple, only about 1,500 have been iden­ti­fied in the Philip­pines as bur­dened with the dis­ease. But even stranger, it has not been clas­si­fied as a “rare dis­ease.” This, de­spite the pas­sage of a law grant­ing incentives and sup­port from bodies like PhilHealth to peo­ple liv­ing with “rare dis­eases.”

Rey­naldo Sar­menta, fa­ther of John and one of the found­ing mem­bers of Hap­los, won­ders if the re­luc­tance to in­clude he­mo­philia in the list is due to the high cost of medicines and treat­ment. While a drug con­tain­ing the “clot­ting fac­tor” is avail­able from phar­ma­ceu­ti­cal firms abroad, lo­cally it costs at least P20,000 per adult dose that should be taken “usu­ally once or twice a month,” says John.

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Through its mem­ber­ship with the World Fed­er­a­tion of He­mo­philia (WFH), mem­bers of Hap­los are able to ac­cess the clot­ting fac­tor at a sub­si­dized price, with WFH promis­ing to make it avail­able for at least the next five years.

“But we can­not rely on sub­si­dies for­ever,” says the older Sar­menta, which is why they hope that gov­ern­ment, through the Depart­ment of Health and PhilHealth, will be able to help he­mo­phil­iacs and their fam­i­lies to shoul­der the life­time bur­den of medicines and other treat­ment.

Mean­time, says For­malejo, Hap­los helps he­mo­phil­iacs and their fam­i­lies re­ceive ge­netic coun­sel­ing, phys­i­cal and oc­cu­pa­tional ther­apy, and live in an over­all “sup­port­ive en­vi­ron­ment.” There is also a pro­gram called “car­ing for car­ers,” look­ing af­ter the oft-un­spo­ken needs of care­givers, usu­ally moth­ers.

It is im­por­tant, says For­malejo, that moth­ers not be seen “as only car­ri­ers but also as car­ers.” For the irony is that he­mo­philia is passed on by the mother usu­ally to her sons. The daugh­ters of he­mo­phil­iac men stand a good chance of be­ing car­ri­ers who could pass on the chro­mo­so­mal de­fi­ciency to their own sons. But through the years, fam­i­lies of he­mo­phil­iacs re­al­ize that while their bodies may be “frag­ile as glass” their will to live is stronger than iron.

———— On­go­ing un­til the end of the month at Pinto Art Mu­seum in An­tipolo is “Ma­te­rial Maker,” the sec­ond solo ex­hi­bi­tion of Joy Ro­jas.

Bet­ter known to many as the for­mer gen­eral man­ager of the Philip­pine Char­ity Sweep­stakes Of­fice, Ro­jas, a lawyer, came to the world of ab­stract art at a ma­ture age. And his road to ex­plor­ing his artis­tic side was paved, in a sense, by an­other call­ing: his love for horses. A long­time horse owner, Ro­jas, says a critic, im­bues his paint­ings with “at­tributes such as speed, move­ment and grace.” In­deed, many of the 28 pieces on dis­play carry the names of fa­vorite mounts, and even ar­ti­facts of horse rac­ing like horse­shoes.

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