Of Star and advocating for people with hemophilia

Star (right) with her Ate Sofie.

Star (right) with her Ate Sofie.

We’re back in the comforts of our home now. Star was discharged yesterday afternoon after being transfused with 14 bags of packed red blood cells and cryo-precipitate.

We cannot thank enough our hematologists, Drs. Mary Chua and Malou Abiera, who have been patiently walking with us and finding ways to make Star’s life better.

Everything’s back to normal.  Star woke up early today and made “dibs” (their term now for laying first claim on something) on the computer.  Over breakfast she declared she would go to church early to serve in Sunday school. She’s a volunteer of the toddlers’ class and loves to “fan-girl” over cute little babies.

This girl continuously amazes me.  One day, she passes out. The next, she doesn’t look any inch unwell at all.  She is a carefree young lady who loves life and never lets anything get in the way. I guess it’s also her way of trying to defy  a life-long disorder.

It’s never easy to balance between giving your child the most normal life possible and at the same time, facing the realities that her “normal” will never be the same as the normal-normal of people without disorders.

Hemophilia advocacy

While in the hospital, I was exchanging text messages with another mother whose eight-year-old girl has just been diagnosed with another type of von Willebrand Disease.   As a quick review, vWD is one of the major types of inherited bleeding disorders generally known as hemophilia.  Hemophilia, known also as the “Royal Disease” (Read: Alexei Nikolaivich of the Romanov empire)  is a group of rare bleeding disorders that affect the person’s ability to clot.  There are many sub-types  as our platelet has 13 factors that enable our blood to clot. If one of these factors is missing or is defective, it affects the person’s ability to clot.

Bleeding in persons with hemophilia (PWH) have different manifestations — some of which may be mistaken  for other totally different disorders (say leukemia, lupus, gynecological problems in women, or even tumor, among many others).

It is then not surprising that PWHs are misdiagnosed.  Parents have to be resolute in understanding their child’s condition and finding ways to minimize bleeds without putting their child in a bubble.

Ironically, only last weekend, I was in a two-day workshop with representatives of different hemophilia groups in the Philippines. We’ve been meeting quarterly to find ways to get government support for people with hemophilia.

Giving a talk to hemophilia advocates last week.

One thing that struck me in the meeting though, is that a  lot of parents still lack understanding of their children’s condition.  Some insist on treating only with factor concentrates — which is the best option but is  very expensive and most of the time, not available in the Philippines.  Their refusal to use other options for treatments (like transfusion of blood products) lead to their children ending up in more dire situation.   Others think that not letting their children walk will minimize knee bleeds.

Another issue that perennially crops up is bullying in school.  This year, two boys died after being bullied in school.  Maybe because of sheer ignorance, their classmates  didn’t realize that a strong “pat” on the head could cause brain bleed or that pushing hard their PWH classmate could lead to internal bleed.

Education, therefore is very important.  Parents need to find ways to understand their children’s condition and be abreast on ways to help them cope with it.   It includes educating people within our circle on what hemophilia is,  without making our children look like hapless babies.  Eventually, they will be on their own.  We need to prepare them now.  ##

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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.

3 Comments

  • Ben Leano (@rbleano) says:

    Lovely girls you have there, Andrea. Never had any daughters just looking for ward to having at least grand daughters. Praying for you and all the other hemophiliacs. All I knew about it was it’s a royal disease. Thanks for your help with Ace and Jayson. Always take care and God bless.

  • Thanks, Ben! And thanks for caring about Ace and Jayson. Will find ways to be of help to them. God bless!

  • Hello Andrea,
    Your bravery, generosity of spirit and beautiful heart simply floors me. It’s no wonder your Star is as brave and giving. I shall keep you in my prayers..Thank you for sharing so much of yourself. Grateful for your offer to help Ace and Jayson Tabing. <3