Andrea with the staff of New England Hemophilia Society in Masachusetts

Andrea with the staff of New England Hemophilia Society in Masachusetts

I always believe that things happen for a reason.

My mother succumbed to a strange bleeding episode in 1988. Though usually never sick, she bled to death while undergoing minor surgery.

Fast forward to January 1995, when I began to have my three children. I gave birth prematurely in each case. Despite some anxious moments, my son and daughter flourished. Two and a half years later,our third child was born—again, before full term.

We thought that, like her older sister, Star would be okay. Then one morning, at three weeks, Star suddenly had a nosebleed. It was alarming to see blood dripping out of her nose. Unknown to us, it was only the beginning of what became our healing journey.

For many frustrating years, we hopped from one doctor to another to seek answers to Star’s frequent nosebleeds and unexplained hematomas. Countless work-ups were done but no one could explain what caused her to bleed.

Finally, when Star was seven years old, we took her abroad for more tests after her nose bled daily for almost a month. Since my family has a history of bleeding, I was also tested.

Three months later, the results came in and it showed that both Star and I have von Willebrand disease (VWD) type 2M.  Although we had expected something would be seen in her tests, we felt sad when the news came. Would she grow up normally?  Would she be able to play?  What if she cut herself ? And what would happen when she starts her periods?

We started to piece together the puzzle in our family.  After many years, we finally found an explanation for the death of our mother, for the heavy monthly periods my sisters and I have and even to the premature births of my three children.

The difficulty we encountered in getting Star diagnosed led my husband and me to start advocating for people with bleeding disorders. We went back to each of the doctors who saw Star over the years and shared with them so that the next time they encountered patients who showed similar symptoms, they would take a second look.

I also started a blog about our journey with VWD as my way of raising awareness about it.

In 2008, I discovered Laurie Kelley’s blog on her LA Kelley Communications website, and learned she was coming to the Philippines. I emailed her and offered to help organize media coverage for her trip.  As a former news reporter and by then a development worker, I knew Laurie’s trip to the Philippines could pave way for the bleeding disorders community to be heard.  She was gracious enough to reply and she even connected me with her host—Columban priest Reverend Donald Kill.

I organized a press conference in Manila, where Laurie and some patients were interviewed. I also invited journalists in Cebu to cover Laurie’s talk with a group of doctors. We received good media coverage in both areas and it paved the way for my former colleagues to support my personal crusade.

What struck me most during our visits around the country was the magnitude of suffering of Filipino patients. We visited hospitals and homes. We talked to parents and patients alike.  In my interviews, I learned that about 90% of patients live below the poverty line, with most families earning less than $250 a month.

The more I listened, the more I realized that while the death of my mom was very painful to my family, others have borne more pain.

Imagine losing not just one child, but three or four.  Such was the story of Rita Rodriguez, mother of five boys with hemophilia.  Rita’s four boys died one after the other in a span of few years.  Most of the boys succumbed to unexplained conditions, usually after an injury while playing.  That was in the70s and 80s.  Doctors back then were baffled with Rita’s boys and neighbors thought her family was cursed.

When Jeffrey, the youngest son, showed similar symptoms, Rita sold all that was left of her family’s belongings and brought the boy to Manila.  She made ends meet by doing odd jobs. But Jeffrey’s welfare was worth the sacrifices.

Today, Jeffrey has not only finished college, he has become one of the key leaders of Blood Brothers Aid, an all-patient organization with headquarters in Manila.

It has been two years now since I got immersed in this volunteer work. Lack of access to medicines remains one of the biggest challenges—I have witnessed the deaths of ten patients due to this.  There is hardly any government support, and so we keep pushing for reforms in the healthcare system.  I lead a patient-initiative lobby, and in line with this, I have made initial presentations with some legislators. With the dedication of patients and their families, I am hopeful we will soon be able to achieve some positive outcome.

Sometimes I am tired by the seemingly huge task ahead, on top of the many responsibilities I have at work.  But every time I feel burdened, I just look at my daughter and think about her future.  Or I think about Rita and mothers like her. I think about the other advocates and the different roles that each of us play—of Laurie Kelley and her team and how they have changed the lives of so many around the world.  Indeed, things do happen for a reason. Every circumstance has a purpose.

Andrea Trinidad-Echavez lives in Manila, Philippines and works as a communication consultant for international development organizations. She and her daughter Star have VWD type 2M. Andrea was recently named as one of the ambassadors of MyGirlsBlood (www.mygirlsblood.com), a global group of women with bleeding disorders. Visit her blog at www.fortheloveofstar.com.

This article was published in One Voice, a quarterly newsletter of Save One Life. Visit www.saveonelife.net .

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About Andrea Echavez

I am an advocate for people with bleeding disorders. My daughter Star and I were diagnosed with von Willebrand's Disease Type 2M.