Every year, we are celebrating the World Hemophilia Day on 17th of April. This year, the theme of World Hemophilia Day is all about diagnosis: first step to care.
When our son was diagnosed with severe hemophilia A, we did all the research, connected with doctors for professional help, and guardians who has patients with hemophilia. For us to know how they take care of them and what are the things not allowed for them. From the food they can eat, sports they can do, prevention for excessive bleeding, and the right way to infuse factor 8. Thankfully, we are able to know what we need. And the first and foremost we come up with is the prevention. We prevent our son from having bleeding as much as we can, without limiting him that much on what he can do on a daily basis. We do not want him to grow up scared and think of it that every action he makes, may lead to bleeding episodes. As he grow up, he learns what hemophilia is, know how to do the basic first aid for himself at the age of three years old, and doing the things that he love on a daily basis. He likes to jump and do obstacle, with a reminder to care of himself as well.
He grew up in an environment, wherein he believe he can do everything, in spite of limitations of having hemophilia. It never become a hindrance for him, since we fully support our son emotionally, physically and mentally. He is very open with the things he likes and he does not like. More importantly, we gave our son the best encouragement our family can, during his dark times.
Even that this is a life-long disease, we already embraced and feeding ourselves knowledge about hemophilia. In this way, we can help not only our son, but the Hemophilia Community to share what we know. What we learned in this journey is that, in every situation comes the greatest support, love and trust. The very first care we can always do is always read and research. Attend seminars and webinars, and do check ups if needed. Lastly, be open with our son and explain his condition, so that he can be fully aware on what is going on with his body.