CEBU, Philippines - Limitations and prohibitions are the top challenges hemophiliacs have to deal with to maintain wellness and proper functioning of bones and muscles.
Strenuous activities, like lifting heavy objects, are a no-no. They are prohibited from enduring long periods of physical activity like hiking because this can cause injuries such as muscle sprains and strains. For people with hemophilia, strenuous activities can cause bleeds.
They are not to indulge in contact sports, like basketball, volleyball, soccer, and boxing, as these expose them to the risk of getting injured.
They have to be very careful with what they eat. Intake of foods such as nuts, soya, tofu, and preservatives high in uric acid content can cause joint pains. Since uric acid is also found in meat and other common food groups as well, hemophiliacs are advised to regulate uric acid level by eating lots of raw fruits and vegetables.
They also have to be very careful about aspirins and other pain relievers. Hemophiliacs must not take pain relievers that contain ASA (acetylsalicylic acid) or aspirin as they can cause more bleeding. Pain relievers merely alleviate the pain, but do not help increase the clotting factor activity for bleeds or wounds to heal.
Theirs is a no-booze life. The liver is responsible for creating the blood clotting factor, so intake of alcohol is a mortal sin. Alcohol causes liver damage, thereby compromising liver function. Alcohol intake causes the liver production of the clotting factor even lower. Drinking alcohol in itself does not necessarily cause bleeding, though. However, it makes people with hemophilia very prone to bleeds.
As there is no known cure for hemophilia, good nutrition and a healthy lifestyle can help cope with the disorder, and also help avoid bleeding episodes.
This is the kind of life Edwardson Co and Janssen Ren Alolor have to endure.
Alolor, 22, an Education graduate of the Cebu Technological University shared he was in grade school in Tugbongan, Consolacion when diagnosed with this bleeding disorder. His family even tagged him as "madugo" (stress on the second syllable).
He was in second year college when his thighs went swollen it was hard for him to walk. "Ngulngol kaayo. I was in bed for a month." He said he thought that would already snatch the living daylights out of him.
Meanwhile, 23-year-old Co who took up Interior Design at the University of San Carlos said he is a frequent visitor of hospitals. "It's kind of depressing, but when I went to college I was determined to finish school no matter what. I had to complete a four-year course in five years. Pero achievement na gyod na namong mga hemophiliacs because of our limitations," he shared.
Co was just nine months old when his mother learned of his bleeding disorder. He was taken to the hospital for an impacted gum. "Kana bitaw mag-ngipon ang bata. Nagdugo daw akong lagos. Gidala ko sa hospital. I was given a suture. Pero sige'g bleed. I was given another suture. Nag-bleed gihapon. A doctor speculated I am hemophiliac, so a test was administered," Co recounted.
The two are active member-volunteers of the Haemophilia Association of the Philippines, Inc. - Cebu at the Perpetual Succour Hospital. The lay support group aims to reach out to PWH (people with hemophilia) and help them through proper information, proper treatment, and proper education.
This is because administration of a vial of Factor VIII concentrate, alone, costs P5,000. The ideal treatment for bleeding episodes is factor concentrate. Factor 8 or 9 concentrate infused to the blood temporarily increases the factor level and aid recovery from a bleed.
However, HAPI-C pointed out that since factor concentrate is expensive, other blood products that contain factor concentrate (though in lower dosages) along with other blood components may be used as alternative: fresh-frozen plasma, cryo-precipitate (for Hemophilia A), and cryo-supernate (for Hemophilia B). (FREEMAN)