Hemophilia Society of Malaysia marked World Hemophilia Day with the launch of The Hemophilia Mythbusters, a comic book that aims to empower patients and educate the broader community about haemophilia.
The comic book was designed to raise awareness of haemophilia and to debunk myths surrounding the genetic bleeding disorder.
Specifically, it is aimed at educating caregivers and children with haemophilia about their condition, emphasising the need to share knowledge that with proper treatment, people with haemophilia can live a quality and meaningful life.
World Hemophilia Day is observed annually on April 17.
“The reality is that the lack of awareness creates a lot of misunderstanding about the condition.
“Lacking awareness about the rare disease, people easily fall for wrong beliefs,” said the society’s president Taqrir Akramin Khalib.
“It is important to educate the public, caregivers, and children with haemophilia so that they are empowered to seek adequate treatment while achieving their dreams,” he added.
The Hemophilia Mythbusters comic book is illustrated by Jian Goh of Miao & WafuPafu. It outlines myths surrounding haemophilia to help parents and caregivers to equip children with haemophilia with the right knowledge of their condition.
The comic book also encourages the public to learn more about haemophilia to refrain from spreading myths.
“The comic book is a great way to inspire children with haemophilia to look beyond the perceived challenges and for the public to spread positive messages, encouraging haemophilia patients in their journey towards a quality life. I believe that while this disease may be rare, hopes and dreams should never be,” added Taqrir.
Also introduced in conjunction with World Hemophilia Day was Zero Bleeds, a digital logbook designed for haemophilia patients, their caregivers and physicians, to help drive higher compliance rates with patients.
The application is an innovative technology to make it convenient for patients to record bleed and infusion events, as well as quickly share the records with the treatment centre.
“Having such a resource can yield vital information that enables patients to better track their condition and health care providers to provide individualised treatment,” said Shire Malaysia Sdn Bhd general manager ViVi Lam.
Globally one in 10,000 is diagnosed with haemophilia.
While in Malaysia, less than 2,000 people are diagnosed with the condition.
A rare genetic bleeding disorder, haemophilia is the lack of clotting factors in the body that prevents blood from clotting normally. Patient bleeding episodes may be external and internal into joints, muscles, the brain, and other organs.
Untreated bleeds after injury, surgery or trauma can lead to crippling deformities of the joints, or life-threatening bleeds.
Although there is currently no permanent cure for haemophilia, the condition is treated with replacement therapy, which involves replacing the clotting factors that are too low or missing in a patient. The condition can be successfully managed by knowing when and how to treat a bleeding episode, and getting regular treatments that replace the missing clotting factor.
“Today, with significant advances in treatment and technologies, we, haemophiliacs are able to remain active and lead a productive life.
“So, knowledge is very important so that we always comply with the treatment procedures recommended by the doctors and other healthcare providers,” said Taqrir.
The development of “The Hemophilia Mythbusters” is supported by Shire Malaysia Sdn Bhd.
It is on sale in MPH Bookstores within the Klang Valley as well as MPH Online. Proceeds from the sale of the comic books will go towards supporting the society.