Ever since he was diagnosed with a rare disease, haemophilia, Hariee Prabakaran’s life has always been bogged down by challenges. Nevertheless, his positive attitude and the support he receives have moulded him into the person he is today.
Resilience in the face of haemophilia
Hariee Prabakaran is on his way to becoming a doctor. In his third year of medical school, the decision was a natural calling as he had spent most of his childhood in hospitals. Diagnosed with Haemophilia A at six months old, the 22-year-old has considered hospitals his second home since he was young.
It all started with a bruise on his abdomen that changed his life, and his parents’ lives, from that moment on. Despite the diagnosis, Hariee shared that his parents remained positive.
“They learned more about haemophilia and how to manage my condition,” said the lad from Seremban.
With regular hospital admissions occurring every two weeks, Hariee often faces challenges such as bruises on his joints, mainly the elbows, knees, and ankles. These bruises are accompanied by pain and loss of mobility in the affected joints.
Each time the prompt arose, his parents would rush him to the haemophilia clinic to get the factor infusion. Due to his fragility, Hariee recalled always missing out on activities like sports or running races, as he had to prioritise his health. The hospital admissions also disrupted his studies.
“When I was in primary school, the principal mentioned that I had this condition and that the students should be careful when playing with me. So, most of my classmates would not even approach me because they were scared.”
Although a few eventually recognised him as a friend, Hariee recalled that many more were hesitant to approach him due to his condition.
Getting treatment
When asked about the incidents that had led to his hospital admissions, he mentioned major bleeds such as bleeding in the iliopsoas muscle and the typical joint bleeds in the elbow, knee, and ankle.
“Apart from the pain that I felt from the bleeding into muscles and joints, I usually felt slightly sad that I had to endure this. However, my parents were a huge support during those times and they would make me feel happy and positive,” he said.
Whenever he experiences a bleeding episode, Hariee receives a Factor VIII infusion for his severe Haemophilia A. However, the treatment faced a setback when his body developed an inhibitor against the factors. He explained that his body was destroying the infused factors, rendering the treatment ineffective in stopping his bleeding.
“The doctor then started me on the Immune Tolerance Induction (ITI) programme to reduce or eliminate my inhibitor levels, but that did not succeed, so I was given Factor VIIa infusions instead whenever I had bleeding.”
Currently, Hariee is on a new medication, emicizumab, which helps prevent bleeding.
“Because my bleeding episodes have been too frequent, occurring once every two weeks, it was basically back-to-back episodes of bleeding.”
Nonetheless, Hariee remains positive despite the adversity. Through his resilience and determination, he can now engage in physical activities without worry, participating in swimming, running, and badminton as advanced treatments have brought transformative changes.
Pillar of support
Through the trials and tribulations, Hariee’s journey, though rough, was made bearable thanks to his primary support — his family.
“With their support, I didn’t feel haemophilia was a burden as they were always there for me and always tried to make sure that I did not get into any episodes of bleeding.”
Growing up, his father played a crucial role by helping him with venous access and inserting the cannula into his veins whenever necessary. Meanwhile, his sister provided companionship when schoolmates distanced themselves. As for his mother, being a teacher, she faced career sacrifices to be with Hariee during hospital stays.
At the hospital, the nurses and doctors were always friendly with him due to their familiarity. Because of all the care and support he received, Hariee decided to pursue a career as a doctor.
When asked if he intends to specialise in a particular field, Hariee disclosed the three fields he is considering: haematology (to help fellow haemophiliacs), anaesthesiology, or surgery. Each of these specialties has played a significant role in his journey, and he hopes to help others through these fields.
“I wish to help by providing more care for haemophiliacs, as any procedure done on us can have complications. By being a medical doctor, I could offer my insight and help with proper management focused on increasing the quality of life for haemophiliacs.”
He also hopes to be a beacon of motivation for other haemophiliacs, encouraging them to stay positive and not see the condition as a burden.
About haemophilia
Considered a rare disease in Malaysia and globally, the prevalence of haemophilia is approximately 1 in 5,000 males worldwide. According to the World Federation of Hemophilia (WFH) global survey conducted in 2022, there were 899 reported cases of Haemophilia A in Malaysia, resulting in a prevalence of 1 in 38,000 population.
Additionally, there were 149 reported cases of Haemophilia B, with a prevalence of 1 in 228,000 population, based on Malaysia’s population of around 34 million. In Malaysia, haemophilia cases are often underreported or under-diagnosed, meaning the actual prevalence may be higher than reported.
Sharing information about the condition, Dr Zulaiha Muda, Consultant Paediatric Haematologist-Oncologist at Hospital Tunku Azizah in Kuala Lumpur, said that signs of haemophilia include experiencing spontaneous bleeding.
“This often leads to bruising under the skin or bleeding into soft tissues and muscles, resulting in the formation of blood clot collections called haematomas. Patients may also exhibit bleeding into joints, particularly affecting areas like the ankles, knees, and elbows, accompanied by pain, swelling, and restricted joint movement.
“Additionally, they may experience episodes of post-injection or post-vaccination bleeding, prolonged bleeding following trauma or surgery, and post-circumcision bleeding.
“In some cases, bleeding into the brain may occur, presenting as seizures or irritability, especially in infants. A significant indicator is also having a family member diagnosed with haemophilia,” she said.
Because of the conditions that haemophiliacs experience, challenges ensue. Mobility issues, particularly for those who have developed joint arthropathy or deformities due to repeated previous bleeds, can disrupt daily activities and routines, causing pain and discomfort.
With these uncertainties, there are worries about engaging in activities or jobs — whether they are safe or whether patients can travel without risk.
“These challenges can significantly impact their quality of life and require careful management and support.”
Nevertheless, Dr Zulaiha assured that with proper treatment, haemophiliacs can live normal lives.
“The commitment of key stakeholders is important to ensure that the patient receives the best treatment and care possible.”
