Ho ho ho! Christmas is finally here! Now, before you dig into that turkey, here’s some food for thought. Did you know that haemophilia B is often referred to as the Christmas disease? Well if you didn’t, you should definitely read on!
What is haemophilia?
Haemophilia is a genetically inherited bleeding disorder. There are 5 types of haemophilia – haemophilia A (factor 8 deficiency), haemophilia B (factor 9 deficiency; also known as Christmas disease), haemophilia C (factor 11 deficiency), parahaemophilia (factor 5 deficiency) and acquired haemophilia A (often occurs due to cancers, autoimmune disorders and pregnancy). All these types of haemophilia are caused by a deficiency in certain blood clotting proteins in the affected individual’s body, which results in the impairment of the body’s ability to stop bleeding due to weaker blood clots. Due to this, affected individuals get bruised easily and have an increased risk of internal bleeding, and may take weeks or even months to recover. When bleeding occurs in the vital organs like the head, neck or abdomen, it can be fatal.
Haemophilia A and B are the main types of haemophilia – haemophilia A affects 1 in 10 000 people while haemophilia B affects 1 in 40 000 people. As haemophilia A and B are X-linked recessive blood disorders, it generally affects males while females are usually carriers of the disorder. Haemophilia C, however, affects both males and females equally.
Symptoms of haemophilia
Some symptoms of haemophilia A and B include (internal or external) bleeding episodes and bruises which take longer than usual to recover. Symptoms of severe haemophilia include the occurrence of more frequent and spontaneous bleeding. Symptoms of haemophilia C include oral bleeding, nose bleeding, blood in the urine, bleeding in the tonsils or postpartum hemorrhages. Symptoms of parahaemophilia include nosebleeds, bleeding on the gum, excessive menstrual bleeding or prolonged bleeding time. Individuals with mild haemophilia only show symptoms after a serious injury or surgery, while those with severe haemophilia display these symptoms more frequently.
Treatment and costs
Unfortunately, no cure for haemophilia has be discovered to date. However, treatments are available to stop and prevent the bleeding.
Individuals with milder cases of haemophilia only need to take infusions of the required blood clotting proteins during bleeding episodes while those with more severe cases need factor infusions on a regular basis as they have a greater risk of spontaneous internal or external bleeding.
In Singapore, these factor infusions could cost as much as $3000 to $4000 monthly as each bottle of factor 8/9 costs about $100 on average, but with subsidies from the government and the Haemophilia Society of Singapore (HSS), the costs for treatment of haemophilia can be reduced to about half of the initial cost. However, even with these subsidies, it can be very difficult for middle class and low income families to manage the expenses for treatment. This is why it is imperative that the government does its best to increase subsidies (especially since there are only about 500 haemophiliacs in Singapore – 200 with haemophilia A and B) and that all of us chip in with donations as well.
Life in the shoes of a haemophiliac
Living with haemophilia can be extremely difficult, because haemophiliacs have to take special precautions before doing many common things that most people wouldn’t even think twice before doing. For instance, people with haemophilia need to be careful with any rough physical activities where there is a strong likelihood of causing a bleed so they often have to turn to non-contact sports such as swimming, badminton and golf in order to lead a healthy lifestyle. Young children who have hemophilia need extra protection from things in the home and elsewhere that could cause injuries and bleeding. Even when going for a vacation, haemophiliacs need to stay prepared by taking extra treatment supplies along, researching on the overseas treatment centres they can go to in case of an emergency and carrying a letter from their doctor describing their hemophilia and treatment, in the language of that country.
Since haemophilia is not a visible condition, it is common for people to not understand the severity of the disorder and to take it lightly. While haemophilia not being visible is good because allows for haemophiliacs to be treated normally, it is integral for society to understand that things that may seem harmless to them could prove extremely dangerous for haemophiliacs, which is why it is their duty to act responsibly towards them.
How you can help
Even with HSS and government subsidies, haemophiliacs in Singapore still have to spend a hefty sum of money per month for treatment, which can be a tremendous burden for their families. A donation from you can go a long way in helping to financially aid haemophiliacs and their families.
You can donate to the Haemophilia Society of Singapore (HSS) by issuing a cheque payable to THE HAEMOPHILIA SOCIETY OF SINGAPORE. Do supply your NRIC number so that HSS can issue you a tax-exempt receipt. Your donation will be automatically deducted in your tax return by the Tax Authority of Singapore for tax computation purposes. Alternatively, you can also donate online at the following link: https://www.giving.sg/haemophilia-society-of-singapore
Another great way to help is to volunteer for HSS. Find out more at: https://haemophilia.org.sg/?page_id=46
An estimated 75 per cent of people worldwide with bleeding disorders still receive very inadequate care or no treatment at all; their disorders remain undiagnosed. A child growing up with a bleeding disorder in a developing country suffers needlessly, experiencing the crippling effects of untreated bleeds. They often miss days of school or don’t attend school at all.
You can make a donation to the World Federation of Hemophilia to help them reach those who live in countries where the gap in healthcare is greatest. Visit http://www.wfh.org/en/donate in order to make a donation/find out more ways in which you can help.
Other than that, you can always make a difference by learning more about haemophilia through the following resources and by sharing them with your family and friends!
Haemophilia annual reports and newsletters (HSS): https://haemophilia.org.sg/?page_id=63