DAVAO CITY – Children with a rare blood condition have something to look forward to in 2015 as fund-raisers announced they are prepped up to support their treatment.
The Mindanao Thalassemia Foundation said that persons with Thalassemia need support on the high cost of treatment and supportive care treatments.
The Foundation’s head, Amy Bisnar, told Davao Today that “kind individuals” committed to help fund the treatment of patients during a Christmas lay forum last month.
Bisnar said another fund-raising activity would be held on Valentines’ Day.
“We need financial assistance, and a formation of a blood pool for transfusions, and facilities in Davao for transfusion and testing of blood,” she said.
Bisnar said until now, patients have to get their blood check by sending their blood samples to medical centers and hospitals in Manila.
Bisnar also said they are making efforts to strengthen their foundation to get support from the international groups of Thalassemia patients.
“We aim to get coordination with international communities of Thalassemia patients and families. We need to get organize and get their support.”
Thalassemia is a blood disorder that makes it difficult for patients to produce hemoglobin, the oxygen-carrying red blood cells. This results to complications such as anemia, excess iron in the blood, and bone deformities.
The foundation estimated that some 500 children and some elderly have been diagnosed with this condition in various regions in Mindanao.
Bisnar said the cost of one treatment called chelation runs at P800 per session alone, but patients need to undergo this treatment at least twice a week. Monthly blood transfusions are also needed to cleanse the blood.
Another treatment called splenectomy can cost around P30,000 to P 40,000 a month.
A worldwide disease
Bisnar said the disease is genetic in nature and has no known causes.
There is also a chance that a family with a Thalassemia patient can have another child with the same condition. “That is why we advised parents not to have another chance,” she said.
She said Cyprus registered a high record of Thalassemia patients with 85% of its population having such conditions. She pointed out that the government in Cyprus has supported its patients.
The World Health Organization (WHO) reported in 2001 that 270 million people worldwide are affected with Thalassemia.
There are two types of Thalassemia, type-A and type-B, with Asia having more type-A cases while more type-B cases are found in the Middle East.
A report from the Philippine Society of Hematology said Thalassemia has been “largely under-diagnosed and under-reported”. Its report in 2006 registrered around 457 cases, with 81% cases found in Luzon and 15.3% in Mindanao.
Advocacy is needed to make people understand the condition even if it affects a few compared to other diseases and disorders, she said.
“Thalassemia is not a disease, it’s an abnormality,” Bisnar said, as she explained that the condition comes out after birth, with symptoms such as a bloated belly and urine with red color.
“Often this is ignored, especially among the indigents who think this is just a case of ‘nasudlan og hangin’ (bloating),” she said.
She cited her own experience with her son, who passed away few years ago, as she recalled her son had a bout of coughs and colds but soon his body changed right after.
“After my son had a cold, he started to get bloated. And he had difficulty urinating, and if he does, it has a reddish color,” Bisnar said.
These patients have to undergo treatment, otherwise complications would happen and become fatal. Bisnar said excess iron can result to bleeding.
Bisnar added that the condition can also affect elderly. She said they had new elderly patients who had joined their lay forum.