A journey of patience and resilience

Chen’s life has taken him on quite a journey. Diagnosed with haemophilia A as a young boy in Taiwan, Chen’s early years were marked by constant bruises, painful sleepless nights and regular hospital visits for injections – sometimes two or three times a week. Yet from these moments of vulnerability, he has crafted a world filled with calm optimism and profound insight.

"People admire my optimism despite my health challenges. Being around other patients has taught me to put navigating haemophilia into perspective, recognising that others are also facing their own battles," says Chen.

From limited access to full coverage

Over the past 35 years, haemophilia care in Taiwan has been transformed from no specialised services to comprehensive, multidisciplinary systems at major medical centres nationwide. Under Taiwan’s National Health Insurance - which supports and fully covers treatment of haemophilia - patients now receive essential therapies that improve outcomes and enhance their quality of life.¹

With a population of 23.5 million, Taiwan has around 1,200 diagnosed cases of haemophilia.² However, despite Taiwan’s impressive economic growth and modernisation over recent decades - which have fostered a robust healthcare system and leadership in advanced therapies - undiagnosed cases of haemophilia are still likely to remain.

“To bridge these care gaps, alongside our local partner Akso Healthcare Co., Ltd we are working to increase physician awareness and broaden access to advanced therapies such as human cell-line recombinant FVIII products which provide patients like Chen more effective and convenient treatment options,” says Javier Marchena, General Manager for East and Southeast Asia at Octapharma. “Thanks to advances in early diagnosis and treatment options, most people with haemophilia can now lead active and better lives.”

A family’s early fears

Now aged 39, Chen vividly recalls his mother’s early fears regarding haemophilia – especially given her memories of Chen’s uncle’s difficult experience with the bleeding disorder. "She told me she was very worried when she became pregnant, but back then there were no prenatal tests or clear diagnostic tools, and doctors didn’t fully understand haemophilia or how it was transmitted," he says.

Despite usually being inherited - as in Chen’s case - up to 30% of patients diagnosed with haemophilia have no family history of the disorder.³

In fact, Chen wasn’t diagnosed with haemophilia until he was around four, after he had suffered from frequent bruising and swelling. "Of course, I didn’t fully grasp what it meant at the time, but my family were already familiar with it through my uncle and were only too aware of the implications for my life."

Growing up, he often endured painful bruises and joint swelling. "Being at school was often challenging", he admits.

Chen’s health struggles went beyond haemophilia. Before kindergarten, a fall caused severe swelling in his left knee. With no effective medications available at the time, his dislocated kneecap was only discovered after the swelling subsided. This injury kept him on crutches for years, and he couldn’t walk unaided until he was 25 and after multiple surgeries. “My knee problems led to muscle loss in my left leg. I was often the kid left sitting it out while others played,” he shares.

Strength in every step

Haemophilia is a bleeding disorder in which the blood-clotting process does not work properly. As a result, people can bleed for longer than normal and can also bleed into joints, muscles, and other parts of the body. Left untreated, the disease can lead to infection, arthritis, and even to the destruction of joints.

Recurrent bleeding into joints is one of the most severe consequences of haemophilia, as it reduces movement and causes both chronic pain and stiffness.

Until just five years ago, Chen’s life was punctuated by frequent, unpredictable bleeding. But in 2019, his doctors introduced him to Octapharma's human coagulation factor VIII - a treatment that has transformed his life. Regular injections reduced his bleeding episodes to almost zero - allowing him to start rehabilitation and gradually increase his mobility. Today, he can travel and enjoy activities he once avoided. “The treatment is so reliable, and has been life-changing for me,” he says.

Everyday moments

Despite their busy careers, Chen’s parents prioritised his health and respected his choices which created a deep bond between them. “My dad treats me more like a friend than a son,” says Chen. “If I wanted to try something unconventional, he’d encourage me - saying ‘Go ahead, let’s see where this takes you.”

Chen also drew inspiration from his grandmother, who faced cancer with dignity. “Her journey taught me that life is short,” he reflects. “We always think there’s more time, but watching her I realised we need to make life meaningful while we can.”

Spending much of his time at home due to mobility challenges, Chen found comfort in hobbies such as reading and computing. These quiet spaces became his world of exploration where he built lasting friendships online.

As Chen reflects on life, he now treasures simple moments, particularly those shared during Taiwan’s lively festivals. “There’s magic in sharing good food and conversation; it’s ordinary but real,” he says. For him, life’s lessons are easy to learn: “Everyone has something to teach us - if we’re willing to listen.”

References

^{1. Yeu-Chin Chen et. al. Evolution of congenital haemophilia care in Taiwan. NIH. Accessed January 17, 2025. Evolution of congenital haemophilia care in Taiwan - PubMed}

^{2. Journals Plos One. Accessed January 17, 2025. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0164009}

^{3. Street A. M. et. al. Management of carriers and babies with haemophilia. NIH. Accessed January 17, 2025. Management of carriers and babies with haemophilia - PubMed}