Wednesday, June 11, 2008

Death from von Willebrand Disease

Ever since we found out that von Willebrand Disease runs in our family, we have been doing, though in our own little way, an awareness campaign to let people know what this disease is. I've been blogging and writing about our journey with von Willebrand. Everyone in our family -- my husband, children and siblings -- have been sharing it as well with people in their circles.

Because Star seems to be "normal" except for her frequent nosebleedings and lately, vomitting of blood, we really didn't find any urgency to be part of a bigger group. Until two weeks ago.

While we were waiting for our turn for Star's transfusion, I made chit-chat with others in the doctor's clinic. Most of the patients, I found out, were afflicted with leukemia. The parents -- about five of them -- knew each other. Apparently, they have a support group and they "borrowed" medicines from each other. "We have to order the medicines abroad," one mother told me. Fortunately, she said, the parent of one of her child's co-patients is an OFW so they can easily ask the parent to buy for the group.

Curiously, one lady came in the clinic without a child. Since the waiting room was just small, I engaged her as well. Do you have a patient? I asked her. Yes, she replied. He's in the ICU. Whoa! My mind started to run a list of people we could seek help from for the patient. So, the reporter in me started to ask questions. What's the child's case? How old is the child? Is she the mother? How can we help her?

It turned out that she was working for an orphanage and the boy she was caring for had von Willebrand disease. He was 4. He had been admitted to the ICU after bleeding profusely for many days. Like us, they had been looking for Koate and thankfully, because of the number given to me, we were able to find it. Unknown to me, another little soul needed Koate even more urgently than Star.

I was speechless. It was only then that Star's condition sank in. Suddenly, I felt so blessed. Silently I thanked God for the grace that He has given us, especially to Star.

Only by God's grace has Star been able to have a semblance of normalcy in her life. Despite her frequent bleeding, she still enjoys pretty much what children her age do. In fact, she's quite active. She's into ballet, Angklung, piano. She loves to trek. And hopefully, she'll learn to bike too.

My heart sank when I heard what the boy went through because of vWD. Very similar to Star, only more severely.

When it was our turn, I told Star's hematologist that I wanted to lobby with our government to have at least one government facility for bleeders in the country. In other countries, bleeders get free transfusion and other medical needs. Having a bleeder in the family is not easy. One transfusion can easily cost at least P25,000. The heavier the patient becomes, the more plasma she/he needs. Generally, it is more costly for women bleeders especially once they have their monthly periods. One mother of another vWD patient told me they spend at least P50,000 per month for her daughter's transfusion.

In a third world country like ours, health is the least priority. Sadly, there are no facilities for vWD patients here, not even in the best private hospitals. Let alone in government hospitals. Even for families of patients, maintaining a monthly transfusion can be prohibitive. One mother told me there are times they could do nothing but just pray for their daughter because they could no longer afford her transfusions.

A day after my encounter with the little boy's caregiver, Star's hematologist texted me that the little boy passed away. My heart broke. What a senseless death!

The boy's death jolted me. We cannot take this disease lightly anymore. We have to do something for all the bleeders. We cannot just focus on our daughter and go on with life not caring for other bleeders. Maybe God allowed this disease in our family so we can feel how others feel. There are many other bleeders out there. We have to help each other.

3 comments:

  1. Wow. I just read your post and posted a link to it at http://www.youmeandvwd.com/index.php. I didn't realize just how good we have it here in the US. I will pray for you and your family and all the vWD families in countries where health care for vWD is so hard to come by. Thank you for being so strong.

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  2. Hello,
    vWD is hereditary, but there are many different types:
    type 1 -» light degree, with which the patients usually end up leading a nearly normal life, but with more bleedings than normal people,
    there is type 2 -» moderate degree
    and type 3 -» severe degree, this last type usually lead to death, if the person doesn't receive treatment
    ...

    «von Willebrand disease (vWD) is the most common hereditary coagulation abnormality described in humans.» from www.wikipedia.org

    vWD affects about 2% of the population,
    but because the most common type of vWD is the type 1, many people with that doesn't realize they have a disease, as they think they are almost normal, because they knew other people in their fammily with also bleeding tendency.

    I have the type 1 of vWD, so I have the symptoms since young: easy bruising, nosebleeds, heavy menstrual periods, etc... I also do have an aunt with that disease who has about 70 years old...
    I have inherited the vWD from my parent or mother, and also from one of my grandmothers or grandfathers.

    After reading a lot I could only found one reference about vWD type 1 and possible death in one case:
    «women who do carry a pregnancy to term are at increased risk of developing potentially fatal postpartum hemorrhaging.»
    in http://www.obgyn.net/medical.asp?page=/english/pubs/announcements/vwd_q_a
    So, the solution would be receiving a transfusion or take some medicall pills in these fase, when needed.

    Coincidentally, i never meet my grandmother who died a few months after give birth to my mother :(
    notice: my grandmom had many sons [five] without medical help in the last century... but she didn't survive to create the last daugther...

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