Sharing is Caring - Hemophilia (The Royal Disease)

Recently, my baby was diagnosed with Hemophilia (type A, Severe) and genetically namamana. Mostly woman ang carrier and sa boy magmamanifest ng symptoms and all. What is Hemophilia nga ba? It is a blood disorder, na kulang ng pampaampat. In this case, may three types of hemophilia; A, B, and combination of A&B. Dito sa PH it is considered as rare and as of today no cure yet. This type of disorder can pass through generation to generation without skipping. If magskip man bibihira lang. And since this is considered as rare disorder, ang gamot dito is limited and donation lang from Western countries and will be given lang depende kung need na need na talaga. Any type of bleeding lalo pag matinding accident, hindi kakayanin ng basta bastang cold compress and dapat madala agad sa hospital ASAP. In case hindi madala, this could lead to fatality. Being a mother carrier with a baby boy, super crucial on both sides since we have to look after our baby every single time. Some would say na hayaan, pero that's not the case kasi. Mauntog lang yan, malaglag could lead to internal and external bleeding which is ayaw namin. Another thing is when the baby hits puberty stage, dun na mangyayare ang swollen joints. Even the food we eat dapat careful kami. May mga MSG that causes bleeding sa anak.namin. for me.naman as a mother, possible maging critical ang giving birth ko again lalo pag CS. So many things could happen lalo na at hindi naman katulad sa ibang bansa na may monthly schedule ng transfusion ng gamot ang anak to live a normal life. Dito sa PH sasaksakan lang ng gamot kapag kailangan na. Add pa.natin na limited hospitals which is only available lang sa city ang nagpoprovide ng ganitong treatment. And isa na doon ang UST. The rest wala na. Some of the hospitals are not even aware of this. Reason why our uncle passed away in his childhood due to tooth extraction. Dentist wasn't aware as well. Some of you would ask why am I posting this? To serve as awareness na may ganitong type ng bleeding disorder and we hope na maging careful sa mga taong makakasalamuha tulad ng ganito in some place. Kasi we don't know. A person who has hemophilia is very fragile and konting pagkakamali lang may put their life in danger #hemophiliaawareness #raredisorder

1 Replies

praying for both of you po na maging malakas pa din po kayo palagi.. ano pong symptoms before ma diagnose si baby mo na mayhemophilia po?

depende siya sa severity mommy. sakin ksi yung baby ko nagpakit na agad sya ng symptoms at 5 months.

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