The Royal Disease (Hemophilia Awareness Part 1)

Like many people, I have different interests during the different stages in my life, and for a while in college, I became very fascinated about monarchies, specifically, the Tudors of England, the Valois of France, and the Romanovs of Russia.

During the time I was reading about Tsar Nicholas II and the shooting of his entire family, I also came across the youngest child and the would-be heir to the throne, Alexei Nicholaeivich, who was born with Hemophilia (or Haemophilia, whichever spelling you’re more comfortable with).

Hemophilia is a disorder that impairs the body’s natural ability to form blood clots. Back then, very few hemophiliacs can survive for long because small cuts and minor bruises can be fatal for them. Imagine getting a tooth removed and bleeding out.

During the time of the Romanovs, Hemophilia is considered a royal disease, and first appeared in Queen Victoria’s family through her eighth child, Leopold, Duke of Albany. Because royal families marry into each other, the disease also affected the royal families of not only England, but Germany and Spain as well, until it eventually made its way to the Romanovs of Russia (in case you’re wondering, Alexei Nicholaevich of the Romanovs is a great-grandchild of the Queen Victoria).

But enough about that. These days, although Hemophilia is still technically considered a rare blood disease, it does not actually affect only the royals, it can affect a lot of other people as well. In fact, according to the National Center for Case Study Teaching in Science, Hemophilia affects about 1 in 10,000 males, and 1 in 100,000,000 females.

Today, there is still no cure for Hemophilia, although there are different types of treatment. While they still need to be cautious, people who are affected can lead fairly normal lives. According to the National Hemophilia Foundation there is even significant progress in Hemophilia B Gene Therapy. However, there is a significant difference in the treatment of this disease in developing countries, for instance, in my home country.


Hemophilia in the Philippines

While Hemophilia is treatable in countries like the United States, Canada, and in many parts of Europe, developing countries like the Philippines have fewer resources and less awareness about hemophilia. To help raise awareness for this very serious disease, then-president Gloria Macapagal-Arroyo issued Proclamation No, 1478 in 2008, declaring April as National Hemophilia Awareness Month and April 17, National Hemophilia Day.

I recently had the opportunity to meet with health advocates. Speaking with Mary Ann Navasquez of the Cebu-based  Haemophilia Association of the Philippines, Inc., I learned that there are a lot of hemophiliacs in Cebu and nearby provinces. In fact, right now, the organization, which offers support for hemophilia patients and their loved ones, have around 147 patients coming from different parts of Cebu, Bohol, Leyte, and in even in Mindanao.

While this does not seem like a large number, these are the known cases, and there are many more that remain undocumented, mostly because in the rural areas, not many know about the disease and as with Filipino culture, those living in remote parts or in the boondocks may consider hemophilia to be a curse put by someone exercising witchcraft (kulam).

For those who have been fortunate enough to know the proper diagnosis, antihemophilic factors (injectible fluids to help with blood clot) are not usually available in the country, and when they are, they cost upwards of PhP 5,000 (about US$ 113) a dose, which is far from being affordable, especially for poor families that make up most of the country’s population.

Because of this, members of what is now the Haemophilia Association came together to help raise awareness about the disease by conducting awareness events and lectures. They offer a holistic approach of support for people with hemophilia (PWH) as well as their families and loved ones. Finally, they also raise funds and gather donations to help with treatment and ultimately to help build a better future for hemophiliacs.


Learn more about hemophilia from these informative websites:

National Hemophilia Foundation

World Health Organization

National Heart, Lung, and Blood Institute

Nemours Center for Children’s Health

If you’re interested in volunteering, donating, or helping by raising awareness for the
Haemophilia Association of the Philippines Inc.,
feel free to contact them via:

Official Website
Facebook
Email

You could also approach them until April 17 at their mall setup
Upper Ground Floor, SM City Cebu
Fronting Banco De Oro

Some friends I met from the Haemophilia Association of the Philippines, Inc. (H.A.P.I.- Cebu)

Some friends I met from The Haemophilia Association of the Philippines, Inc. (H.A.P.I.- Cebu)

or visit them at
Hemophilia Center of Cebu
Mezzanine Level, Our Lady of Chartres Building
Perpetual Succour Hospital
Gorordo Avenue, Cebu City

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One thought on “The Royal Disease (Hemophilia Awareness Part 1)

  1. Pingback: H.A.P.I. – Cebu (Hemophilia Awareness Part 3) | AERE PERENNIUS

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