Today is World Hemophilia Day

It has been 3 years since my son was diagnosed with severe hemophilia A. The past years were very challenging for us. Knowing that our country have limited knowledge to rare bleeding disorders, it is also hard for us to look for medical practitioners who knows how to infuse for hemophilia patient.

Recently, our son got into a mild accident wherein he accidentally stumbled and hurt his right foot. He is currently in the province that lacks medical care for patient like him. In order for us to get him treated, we connected to HAPLOS Hemophilia Philippines – an organization for patients with bleeding disorder. I called one of the officers and asked help for the members on nearby areas. Several calls and coordination were made, and luckily we were able to find one. The infusion started and right now he is on recovery mode.

Given that our son is a 3 year old boy and a toddler, it is really hard for us to stop him from moving, as he seeks adventures and obstacles. His pain tolerance is so high that he can endure the pain. But despite that, I am so proud of him being so strong and healthy.

As a mother and a carrier of Hemophilia, I also feel symptoms like easily bruising, heavy menstrual and prolonged bleeding and joint pains across my knees. There are days where the pain won’t let me sleep. But overall, I was able to get through with it.

I am so thankful that even in dark days, the HAPLOS Hemophilia Philippines will always be there as a support system (emotionally and mentally) to mothers like me and patients like my son. Ever since we joined the organization, there was not a time that they did not answer all the inquires I had. They helped me and educated me more about this and engaged with different members.

And to my family especially to my husband, I am so thankful that despite our situation, they are always there to help us during the hard times, added by the people around us who supported us in this journey.

Lastly, as we celebrated the World Hemophilia Day, I want everyone to know that this rare bleeding disorder is just around the corner. To share with them what this is and for them to stop judging the Hemophilia Patients that they are limited on the things they can do, and cannot do normal things like other people does.