A morning with hemophilia

APRIL is the National Hemophilia Awareness Month in the Philippines.

The term “awareness” is a key concept to this reminder because many Filipinos are not aware of this condition even if they may happen to have it. The Philippine Council for Health Research and Development (PCHRD), a unit under the Department of Science and Technology, reported in 2016 to the World Hemophilia Federation the estimate of Filipinos with hemophilia (10,000). However, that estimate was highly mathematical and might not have represented reality. In contrast, PCHRD reported that only “around 1,200” Filipinos had been identified as having hemophilia. 

Thus, the needs assessment survey that Hemophilia Philippines launched in 2018 was a good start. However, since it is an online survey (via SurveyMonkey.com), there is a serious question of access and diagnosis. Do Filipinos with hemophilia know how to use the survey platform? More importantly, how can they even think of joining the survey if they are not even diagnosed yet?

The structural problem is obvious. The survey must be implemented at the community level through the community health centers and hospitals around the country.

The PCHRD identified “two types of hemophilia.” The more common type is Hemophilia A and the rarer type is Hemophilia B. Both types have missing or defective clotting components: Factor VIII in Hemophilia A and Factor IX in Hemophilia B. Unfortunately, there is no cure yet for hemophilia. It is so largely because the condition is hereditary in nature. Thus, once these factors have problems, the only option is to repair them. However, no one can do that yet.

Now, just when we realize our problem of mapping out hemophilia among Filipinos, a new form of hemophilia emerged. This type is called “acquired hemophilia.”

It is difficult to trace the first reported case of acquired hemophilia. However, research reports in late ‘80s indicate that the case may have appeared first around mid-20th century.

Acquired hemophilia often manifested as Hemophilia A because the spontaneous disorder commonly involved Factor VIII. In fact, around more than half of the cases are idiopathic (of unknown cause) in origin. Simply put, a disease of unknown origin is a disease of unknown treatment.

If you ask me, there is a providential component in the appearance of acquired hemophilia. The best move, it seems, is to bend our knees and embrace in prayer, the God who provides and heals. It sounds like a “wake up” call to me!

Source: https://www.sunstar.com.ph/article/1800743

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