Fragile as glass, strong as iron
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.
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.