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World Haemophilia Day 2020 – Creating a Path towards a Better Quality of Life for Patients


17 April 2020, Thailand
– April 17th of every year marks the annual World Haemophilia Day to raise global awareness for haemophilia also known as a rare bleeding disorder, in addition to expanding the accessibility of efficient treatment options for patients both in Thailand and worldwide to enhance the quality of lives for patients and their families. This year, Roche Thailand is partnering with Thai Hemophilia Patient Club (THPC) to enhance knowledge and clarify misconceptions associated to the disease by organizing an online activity to engage with patients and their families and create a better understanding of the proper care and treatment options. Additionally, the activity aims to serve as a platform for patients to share self-care experiences as well as provide moral support for one another.

Haemophilia is classified as a rare disease with the World Federation of Haemophilia estimating the number of patients to be around 400,000 people worldwide[1]. According to a survey conducted in 2018, there were a total of 1,660 recorded cases in Thailand[2], which is likely to be higher as it is predicted that many are yet to be diagnosed, in addition to the current limitations in accessibility of efficient treatments and care.  

Haemophilia is an inherited bleeding disorder which inhibits the blood’s ability to clot. As a result, patients can bleed for an extended period of time and some may experience spontaneous bleeding into joints and muscles. Furthermore, cases of internal bleeding can escalate critically and result in major complications for patients. Initial symptoms can be observed as frequent bruising during childhood, extended duration of bleeding, spontaneous bleeding for no identifiable reason and extensive bleeding due to injuries from accidents or after operations. Although there is no permanent cure for haemophilia, the vast development of innovation in treatment and care has helped to continuously enhance the quality of life for patients. As a result, patients can lead happier and more fulfilled lifestyles where some patients are even able to play sports with their peers. Regardless, the risks and benefits of each type of physical activity must be carefully assed for safety measure.

Eakawut Suwannaroj, Vice President of the Thai Hemophilia Patients Club revealed “The advancement of haemophilia treatment has experienced exponential growth compared to the past, backed by the government’s support in collaboration with hospitals and healthcare professionals. This development has enabled greater care for patients so that they can receive efficient treatments in a timely manner. With the addition of new technologies that are being used to create safer treatments for severe cases of haemophilia, we have also observed a vast reduction in disabilities amongst this specific patient group. Evidently we see some cases of children with haemophilia in Thailand today who are able to play football or participate in other school activities with friends which is such a rewarding experience for both the children and their families and can provide hope for other patients to lead a normal and fulfilling life as well.”    

Organizing regular events for the patients and their family is highly crucial as often time patients can experience difficulties adapting to social norms. Therefore, uniting patient groups to share experiences and knowledge of proper treatment and care as well as providing moral support for one another can greatly benefit the patients’ mental and physical well-being.

There are still circulating misconceptions about haemophilia today. For example, it is believed that once patients start bleeding, they will continue to bleed out which may result in fatality. In actuality, not all bleeding is life threatening but they can come in the form of bruising or bleeding into joints and muscles which does require timely treatment. However, should this become a regular occurrence, it may lead to long term injuries. Furthermore, there is also a misconception that patients of haemophilia cannot participate in sports, when in reality patients can participate in regular sports such as swimming or running. Hence, with proper treatment, haemophilia patients can lead normal and fulfilling lives with a similar life expectancy with that of an average person.  

Although rare, haemophilia should not be overlooked and requires profound understanding in order to provide proper care and treatment for patients. Moreover, moral support from peers is a crucial part in cultivating a fulfilling, happy and most normal life for patients both physically and mentally. To learn more about haemophilia and stay updated with news and activities visit Thai Hemophilia Patients Club (THPC) page on Facebook @Thaihemophiliaclub or https://www.roche.co.th/th/disease-areas/busting-myths-in-haemophilia.html

 

[1] Guidelines for the management of hemophilia 2nd edition by World Federation of Hemophilia (http://www1.wfh.org/publications/files/pdf-1472.pdf)

[2] Annual Global Survey 2018 by World Federation of Hemophilia (http://www1.wfh.org/publications/files/pdf-1731.pdf)