Reflections from a hospital room

By | Bleeding Disorders, Hemophilia, Star, von Willebrand Disease | 2 Comments

I am sitting here in my daughter’s hospital room, watching her as she sleeps, pondering on her future and the future of other Filipino “bleeders” like her. With the election fever high up in the air, I wonder what difference the incoming elected officials will bring to the very sick public health sector.

“Bawal magkasakit” is so real in this country where health care is almost like a luxury, especially for people with rare disorders like Hemophilia. Also known as “royal disease,” it is so coined because some members of the royal families are affected by it…. In the Philippines, the term “royal disease” takes a different meaning. It is considered a “royal disease” because only the “royals” can seemingly afford it. Hemophilia treatment is very expensive. Minor bleeds can cost a minimum of P30,000 per treatment. This does not include cost of hospitalization and the doctor’s fees. Major treatments can cost millions.

Read More

“Royal disease” took her four sons

By | Hemophilia, Philippines | No Comments

Every year, Rita Rodriguez, 54, would religiously light a candle in the early mornings of All Saints Day in remembrance of her four sons – Noel, Ricky, Materno and Antonio – who died one after the other in a span of two decades.

Cursed, was how people from her hometown of Tanjay in Negros Oriental, thought of Manang Rita. Little did they know that a rare hereditary bleeding disorder called hemophilia was the culprit behind their deaths.

“I would have wanted to go home to Negros to personally visit their graves but life is hard,” said the 54-year-old mother of eight, who has been struggling to keep another son Jeffrey, from falling into the same fate as his older brothers. In between Jeffrey’s confinements, Manang Rita would make ends meet by offering services as masseuse or cleaning houses and doing laundries.

Jeffrey, 25, a psychology student in Adamson University, was diagnosed with hemophilia when he was barely 3-years-old following a supposedly minor injury on the head that caused profuse bleeding. By then, two of Jeffrey’s older siblings had already succumbed to strange internal bleeding episodes. (Jeff, far right with green bag, along with his fellow Sakristans in a local church in Taguig. Hoping for a normal life.)

Manang Rita remembered her older brother, Luis Torres, would also profusely bleed from the smallest injuries. But they did not know that hemophilia runs in their family.

Read More