Jakarta, CNN Indonesia –
For people with hemophilia, even a small wound will cause bleeding no stopping. How does it feel to live with hemophilia?
Hafizh Kalamullah, who was diagnosed with hemophilia at birth, felt his childhood was a very difficult time.
Compared to friends his age, Hafizh can’t play much. Playing only creates the risk of collisions, falls and injuries which can make the blood flow non-stop.
“Hemophilia, can, the characteristic is easy to bleed, easy to bruise. If there is heavy physical activity, it falls a little, it swells up, “said Hafizh during a webinar on World Hemophilia Day 2021, some time ago. Instead of playing, Hafizh spent more time on therapy.
When there is injury or swelling in the joints, he should undergo blood plasma or blood pump treatment. From this blood plasma he will get the necessary clotting factors to meet the amount needed.
She still remembers waiting in line to get a donor, then the pain from bleeding mixed with blood plasma injections to stop the bleeding. However, hemophilia treatment therapy is slowly changing for the better.
“Since there was this concentrate, it changed. From bags of blood to one small bottle. Then we got bigger, so we could organize our own activities. The art, yes, arranging the schedule for when to go to the hospital for treatment, doing activities like a normal person, yes, going to school, I can graduate with a computer degree, then work, have a family, “said Hafizh.
Pradana Zaky Romadhon, a specialist in internal medicine at Universitas Airlangga Hospital, said that hemophilia is a bleeding disease caused by a lack of inherited or hereditary blood clotting factors.
Hemophilia treatment aims to stop bleeding by replacing clotting factor or clotting factor substitution for example clotting factor VIII for hemophilia A or clotting factor IX for hemophilia B. The drug given to patients will be clotting factor VIII concentrate or clotting factor IX.
Concentrate administration needs to be done continuously, throughout the patient’s life. Usually, the concentrate can be given 2-3 times a week.
“Patients have to go to health facilities and the costs are not cheap. Therefore, patients with hemophilia are fortunately closed by BPJS, and have to go to health facilities to get the concentrate,” Pradana explained to CNNIndonesia.com, Friday (16/4).
With routine control and therapy, hemophilia patients can live like normal people. This was also admitted by Hafizh. When he is routinely undergoing treatment properly, his quality of life will also get better.
During a pandemic like this time, Hafizh also did not relax routine condition checks and therapy. Everything is done for the sake of a good quality of life.
(the / asr)
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