Leddah Ira Agustin

Leddah Ira Agustin


I would like to share with everyone about my Son’s Hemophilia Journey.

My son was diagnosed with Severe Hemophilia-A when he was seven months old. Unaware that all this time, he inherited the genetic disorder that runs through our blood. Not knowing that I am a carrier. Before we have him tested, symptoms showed already like easily bruising, prolonged bleeding on vaccinated area, and swollen vaccinated area after.

As a first time mom, it is very hard for me as he is our first baby. Once we learned what he have, We scheduled a check up to a pediatric hematologist, took all the precaution and advices given by the doctor in case we find bleeding on sensitive areas like joints and gums. And what is the current medication given to a hemophilia patient. We also registered him as a patient with hemophilia here in the Philippines in HAPLOS, which supports the patients with different types of bleeding and to have an idea on how to have an access to medications.

Given that Hemophilia is not known in our country, it is really hard to look for a hospital who has an idea with this disease. We have to go to the city when he needs to infuse and be checked by doctors. And another one is that, in our country, we only do infusion when bleeding is present especially in joints and bleeding areas. Unlike in other countries, they normalize infusion at least twice or thrice a week.

His first infusion happened last July 2023. His joint was swollen and needs to be treated immediately to stop the bleeding. Afterwards, the next bleeding recurred last November and December 2023 due to swollen feet both left and right. And the most recent was January 2024 of this year. We thought that he was coughing blood due to his allergy, but then we realized that it was coming from his gums. We went to the ER to help us with infusion, as we do not know yet on how to insert the IV, we asked for assistance from the resident doctors to help us with our concern.

Right after that, he had his follow up check up with his pediatric hematologist, and was prescribed with tranexamic acid, a medicine which can help our son stop from bleeding especially on gum area.

Currently, our son did not show any signs of bleeding, and as much as possible, we do all the necessary things like first aiding in order to prevent our son from bleeding. Knowing that he was a severe patient and no regular infusion in our country yet, we do what we can do in order to prevent him from bleeding.

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