In 2007, our youngest daughter Star and I were diagnosed with von Willebrand Disease (Type 2M), a rare bleeding disorder also known as pseudo-hemophilia. It is an inherited disorder that impacts the blood’s ability to clot properly. As a group, bleeding disorders like vWD and hemophilia are rare.
For a long time, it was believed that bleeding disorders can only affect men. But in 1926, Finnish pediatrician Erik Adolf von Willebrand, discovered a different type of bleeding disorder that equally affects men and women.
How our journey started
Barely three weeks after she was born, Star started to nosebleed. Since then, we had sought a number of specialists but they could not pin down the cause of her frequent nosebleed and bruises. Finally, after seven (7) long years of doctor-hopping and countless blood tests, we found the answers — defective platelets.
Because vWD is a rare disorder, not too many health practitioners are aware of its symptoms. In fact, my mother literally bled to death while undergoing biopsy operation simply because the condition was still unknown in the Philippines at that time.
We hope to share Star’s journey with vWD and reach out to others who may also be searching for answers to their own condition.
My Girls Blood Ambassador for the Philippines
In 2011, My Girls Blood, an international social network of women with bleeding disorders, appointed me as Ambassador for the Philippines. As an ambassador, my main task is to keep on doing what I’ve been doing — advocate for people with bleeding disorders, especially women. Being an advocate has helped me more. Our journey with von Willebrand Disease is no longer as lonely as it used to be. We now belong to a real community of people who “speak the same language.” Check out My Girls Blood at www.mygirlsblood.org.