Maria de Guzman shares how caring for her two sons with severe hemophilia A has shaped her life, from learning to manage bleeds and prevent injuries to finding strength through community support and self-care.
Transcript
Hi everyone! My name is Maria de Guzman, and I live in Manila, Philippines. I am a mother of four. I have two sons who have both hemophilia A severe. And my younger son also has autism. Being their caregiver is my full-time responsibility, and it has completely shaped my life.
My sons were diagnosed when they were still very young, 3 months and 5 months. At first, it was overwhelming because we didn’t understand hemophilia fully, and we were scared about what meant for their future.
Over the time, we slowly adapted, we learned how to recognize early signs of bleeding, how to respond quickly, and how to prevent injuries.
I also adjusted how our home environment to make it safe, created a routine, and to reduce risk for them. I sought help from the doctors to better understand how to take care of my children.
I also join a hemophilia organization, which helped me connect with other parents. Through the community, I realize I am not alone. We share experience, advice, and emotional support. It made big difference in my journey.
We do have a GC, a chat room. If I needed advice, I message them. If I’m not busy, I ask them if they have time so we could see each other to drink coffee, or just to make a chat and to know them better.
Now, the years go by, we’re so close. Me and the other members of our community, even our hemo doctors.
For self-care, as a mother, I learned that I also need to take care of myself so I can take care of my children. I’ll try to rest whenever I can. Even if it’s a short break, I also talk to supportive friends, just like what I said earlier, and take time to calm my mind. Sometimes prayer is also important for me because it gives me strength.
There are days when it feels overwhelming, especially balancing hemophilia, but I reminded myself that I need to stay strong for them.
My message or advice to other caregivers: Please don’t lose hope. At first, it feels overwhelming. But with time, you will learn how to manage it. You can ask for help, connect with other parents about hemophilia. Knowledge give you confidence and strength.
Most importantly, take care of yourself, too, because your well-being is important for your children’s stability and care.
