Unbleedable – Hemophilia & Its Social Implications in Singapore

Raising awareness of patients' condition in Singapore

WHAT IS HEMOPHILIA

Sometimes referred to as people with the “Royal Disease”, patients with hemophilia have low or almost non-existent levels of blood-clotting proteins in their bodies. Whenever hemophilia patients suffer cuts and bruises (e.g. when engaged in contact sports), it takes a long time for the blood to clot. Consequently, it can lead to heavy blood loss, even when the patient has suffered only a minor cut. When people suffer incisions, coagulation (blood clotting) is the body’s natural way of preventing too much blood loss.

In addition, because patients with hemophilia have insignificant levels of blood-clotting proteins in their bodies, blood coagulation normally takes a long time. It therefore exposes the patient to the possibility of suffering from heavy blood loss, severe complications and other side effects.
Severe complications from heavy blood loss include patients going into shock, and eventual death or permanent damages in the major organs. Altered (confused) state of consciousness is also highly probable.

There are two types of hemophilia. They are referred to as Hemophilia A and Hemophilia B. Patients
with Hemophilia A are diagnosed to have a deficiency in Type 8 blood-clotting proteins, while patients with Hemophilia B are perceived to have a deficiency in Type 9 blood-clotting proteins. Both conditions require different treatments, and 9 out of 10 hemophilia patients suffer from type A kind.
Hemophilia has been found to be mostly inherited by the patients from their parents. To determine whether a patient suffers from hemophilia, blood tests are conducted to check the effectiveness of the individual’s ability to coagulate blood. Due to the genetic disposition (i.e. chromosomes), most hemophiliacs are male. Hemophilia among women is very rare.

At this point, there is no known cure for hemophilia. The only treatment available involves a two-pronged approach:

1. Preventing one from getting cuts and bruises (i.e. Avoiding contact sports and other injury prone activities).
2. Infusing bleeding hemophiliacs with the necessary blood-clotting proteins to stop blood flow.

SOCIAL ISSUES FOR HEMOPHILIACS

1. Bottles of blood-clotting proteins used for treatment of Hemophilia do not come cheap. According to the Hemophilia Society of Singapore, a bruise on the ankle joint may require more than 6 bottles of Factor 8 which costs a little above S$100. People from affluent families can easily pay the price, but the not so fortunate ones are obviously in trouble.
2. Whether we like it or not, there is a social stigma attached to people with medical conditions, and hemophiliacs are no exception.
3. The public needs to be better informed about hemophilia. Because hemophilia is not among the “Top Ten” killers in Singapore, the public does not hear much about it. It is precisely for this reason that the public must be better informed, so that when they encounter the condition they will sufficiently be equipped to deal with it.

4 MUST-KNOW TIPS FOR CARETAKERS OF HEMOPHILIACS

1. Patients not suffering from severe hemophilia should be encouraged to take up sports, to strengthen their bodies. Being a hemophiliac does should not be a deterrent to physical sports. It simply requires that patients be extra careful.
2. It is highly unlikely for a hemophiliac to bleed to death with just a minor cut. Ith therefore means that early treatment is simply required. When in doubt, always seek professional medical attention and provide the patient’s particulars (i.e. Drug allergies, hemophiliac severity etc.)
3. Always inform a doctor when a hemophiliac suffers a head injury. A small head bump may lead to internal bleeding in the brain.

Hemophiliacs should never take any medication that will thin their blood. Aspirin is therefore, very much not advisable.

This article is a product of research and intended to raise awareness of hemophilia. It must not be misinterpreted as professional medical opinion. Should symptoms similar to hemophilia is detected, please get a doctors opinion.

SOURCES/CITATIONS:

• http://www.livingstories.org.uk/
• http://www.haemophilia.org.sg

Note: Yeo Teck Wei is a freelance writer based in Singapore.