Hemophilia Awareness and Support Group Philippines

14/08/2025

Hello, this post is to document a bleed, and to spread awareness.

I am a 15yo patient that has been dealing with Hemophilia since birth, this is a quick summary of one of my bleeds and is what I've had to deal with my whole life.

Not too long ago, just when I got home from school, I started to feel a bleed start on my left arm, and just a bit of pain on my right foot, thankfully it started when I got home, not in the middle of class, so recovering from it would be a bit faster. However, when I was preparing my medication, the pain on my arm quickly got worse, Which I feel like contributed to something worse later on.

After I infused myself, I rested and took extra precautions by icing the injured area, taking Predisone, and recovered like how I usually do from every other bleed, then, the next day, I fully recovered and continued on.

However, just a week later, the pain that I felt around my right foot came back again, almost as if it was pretending to have healed, where I again had to infuse myself with my medicine, where this time, I've fully healed with no bleeds that seem to be coming.

In total, I used 1000 IU recovering from this, 500 IU for each bleed. The pain I felt of course hurt, but it also restricted my movement, which made walking around or just moving around hurt in general. And this isn't the only time I've had to deal with this either, I've been going through this for my whole life.

If you know anyone or you yourself that goes through anything like this, interact with this post or spread the word!

Send a message to learn more

05/08/2025

Good evening, this post is meant to be a diary of sorts to document one of my bleeds. I am a 15yo Hemophilia patient that has been diagnosed since birth, this is a summary of one of my recent bleeds.

Just a few days ago, I had a bleed both on my right foot and left arm, and as usual, I treated it by injecting myself with my needed medicine Factor 8. Soon after I got the shot, I took a simple rest, took Prednisone: a tab that helps with reducing swelling, put ice on my leg, elevated it, then went to bed.

Unfortunately, when I woke up a few hours later, the dosage I took wasn't enough, and I needed a follow-up shot which I took, thankfully, that was the last needed shot, and I fully recovered.

Or so it seemed, because today, I woke up, and the bleed I had on my leg seemed to have come back, even without me excessively running around or doing any physical activities, it started again.

It didn't take long for me to realize that the main problem was the fact I had something sugary/sweet the day before the bleed started, in which I believe that too much sugar intake contributed to part of this problem

My medicine, Factor 8. Is a substance which most people are born with and already have inside their bodies.
However, for rare cases like me and many others, there's a chance you can be born with less or even no Factor at all, making injuries a lot more dangerous if you don't have the medication.

Being a Hemophilia patient is a big hit to both you, and
your family. Not only will injuries be a lot more dangerous to you, but it'll also limit the things you can do and have, sweet treats and drinks will potentially inflame you, playing Basketball or Hockey can run the risk of a bleed, and most importantly, your bank account will take a huge hit because of the price of the medication.

If you know anyone who suffers from this condition, or if you yourself are a patient of Hemophilia, be sure to spread the word of its danger, and how it is a very real problem.

Send a message to learn more

18/07/2025

Good evening, this post is to document a bleed and to spread awareness

I am a patient with Hemophilia on a severe level, and this is an example of one of the many bleeds I've had.

Just a few days ago, I had a bleed on my right arm, and I wasn't able to bend it, however, unlike most times where I manage to treat the bleed during the start of the pain, the bleed started when I was asleep, so I wasn't immediately able to get my bleed treated.

Since my bleed was on one of my arms, treating it was very hard, as the pain also distracted me from properly inserting the needle. And because of this, I had to take a ride to a nearby hospital to have someone else help me with my arm.

After I got the injection, I went home and iced the arm, and took some medications to further help treat my bleed, and took a rest until the next day to see if it would improve by then.

Unfortunately though, my bleed did not fully recover, so the next day I had to get it treated again. The problem is, since it was my arm that was still bleeding, I wouldn't be able to inject myself again, so I had to head to my doctor's to get the treatment.

After all of this, I finally recovered from my bleed, and a total of 4 Vials were spent only on this one bleed, with each one of them being 250 IU for a total of 1000 IU infused, all within 2 days.

Hemophilia does not only dent my life in the things it does to my body, it also does a large dent to bank accounts, as thousands of pesos have to be spent to prepare to even treat one of my bleeds.

I know I am not alone however, and I'm aware that there are many people out there who also suffer from this condition. And I know that there are also many people out there that are willing to help, as they have also helped me.

So I would like to ask you,fellow patients, to share any experiences you've had like this, where we can all speak up and spread the word of the things we've been through and experienced.

Send a message to learn more

11/06/2025

Good morning, afternoon, and evening. This post is meant to document a bleed of a Hemophilia patient.

Just a few days ago, I had a bleed around my left hip in the morning, which must've started late while I was asleep, as I never felt any pain prior to sleeping, moving the rest of my leg was fine and I had no trouble doing so, but that didn't really matter as it was my hip which was the focus, making moving everything else a problem.

As per usual, I had to treat the bleed and inject myself with Factor 8. I infused myself in the morning with 500 IU as per every bleed I have, once this was done, I took Prednisone, which was medicine that helped relieve forms of pain, oddly though. I tend to get hungry after taking it, so of course I had some food, then rested and hoped that the pain would go away over the rest of the day.

Over the next few hours, I would start noticing that the pain slowly stopped going away, it didn't start coming back, but both medicine's effects started wearing off, meaning around 7pm, I had to take a second dose of Factor 8, and another tab of Prednisone.

It took a total of 1000 IU to recover my bleed. But now, I'm okay, and am able to walk and move around properly again.

Send a message to learn more

22/05/2025

Good morning, afternoon, and evening. I will be keeping myself anonymous, but I'm 16 years old, and have Hemophilia with a severe level.

A week or 2 ago, there was a cosplay event that I was going to, but before that, I had to prepare and get an Injection of Factor 8, despite the fact I didn't have a bleed.

I had to take this injection an hour or two before the event, so that it could nullify the effects of any potential bleeds that could start from me walking or running around too often.
After this, I was able to attend the event like usual, and didn't suffer any bleeds thanks to the shot I took. Because of this, I can live a normal life, just If I'm able to get prophylaxis treatment, which can cost a lot of money.

I heard that in first world countries, they are given Factor 8 treatments for free. Some of them are even on Hemlibra which prevents them from having any sort of bleed. My name was submitted to the world Federation of Hemophilia to potentially be one of the recipients of Hemlibra. But apparently the Philippine government would not allow the medicine to come into the country as it is not FDA approved..
..Which I think is bizarre. If this was approved in the first world countries why can’t a Third World country accept the help that they cannot provide their own citizens? It's incredibly frustrating, how I can't get the same treatment like everyone else because of my own Government not allowing shipments of the one thing that could potentially help me live a normal life. It'd be so nice to get the same treatment as everyone in first world countries, but I can't.

Send a message to learn more

25/04/2025

Good morning, afternoon, & evening. My name is Marco Sebastian Gutierrez, I'm 15 years old and I've been diagnosed with Hemophilia A on a severe level since I was born.

Just a few days ago, while I was asleep, I woke up with a really bad bleed on my left leg, I took a shot of 500 IU Factor 8, but it didn't do anything, another shot later of the same dosage, and the bleed still refused to get better.

I had to take a 3rd shot with Prednisone tablets afterwards, meaning I had to inject myself with 1500 IU in total, Factor 8 costs a lot too, meaning 22500+ Pesos was spent on that day, just for 1 bleed.

It can be scary when this happens, since if I were to run out of my medicine, then the next bleed I'd have would never go away, and it would either immobilize the area it's bleeding in, or just cause a lot of pain, with even both being able to happen.

If you have questions feel free to ask or if you have experiences of your own maybe share them with me. I’d love to hear from you

Send a message to learn more

28/06/2024

Makatarungan ba nga i-tax sa Customs ang donated medicines? Humanitarian aid from overseas $1.4M ang tax? Can someone help us?