Living with haemophilia

The children and teenagers at the camp looked and behaved like any other boys. On the surface, no one would have been able to tell them apart from other children and teenagers.

Yet, these ones have inherited a blood disorder called haemophilia; the blood lacks a protein - Factor Eight (VIII) or Factor Nine (IX) - and therefore cannot clot properly, leading to spontaneous or prolonged bleeding, especially in the muscles, joints and internal organs. When this happens, ugly bruises develop.

This condition, which is also marked by painful and inflamed joints, affects primarily males while the carriers are females.

Co-hosted by the Taiwan Haemophilia Society and Bayer HealthCare, the 3rd Asia Pacific Haemophilia Camp was held in Uni-Resort of Mawudu in Hsinchu county, Taiwan, recently.

It brought together those affected by the condition, to learn and share about haemophilia, and build friendships with fellow patients.

The camp also aimed to motivate, encourage and empower patients and their caregivers. Over 100 participants from Malaysia, Indonesia, Thailand, Taiwan and China attended the camp.

Facing the diagnosis

How can one tell if a bruise is just a normal bruise or whether it is due to haemophilia?

"There are two ways to be diagnosed. If you are born into a family that knows they have haemophilia, your parents are at least a bit prepared for it," says Brian "BJ" Ramsay, a haematology specialist nurse from New Zealand, in an interview at the camp. "If a family has a history of haemophilia, the baby is diagnosed at birth.

"In the first year of life, babies don't do an awful lot: they lie still, they're picked up, fed and put down. So the actual bleeding risk is quite low," adds Ramsay.

Parents who know the diagnosis from the time of the baby's birth have about a year - before the baby starts crawling and walking - to get used to the diagnosis.

"But for those who don't get the diagnosis at birth, and haemophilia is new to them, it is a lot more difficult. When it gets picked up as the baby starts moving around and bruising, it is then that the problem begins," says Ramsay.

"Treatment of small children can be difficult. You need specialist doctors and nurses to get venous access. Babies' veins are very small; sometimes it can take two, three, even four attempts to get a needle in. Treatments can be as traumatic as the bleeding.

"These parents hit the road running. There's an awful lot to take on at once," he explains.

Without treatment, the disease can result in debilitating pain, damaged joints, disability and even early death.

Wong Mun Kee knows all too well the grief and heartache of losing a child to haemophilia.

Her elder son was only five years old when he suffered a fall, which led to bleeding and subsequently, death. If he had survived, he would be 21 years old today.

Wong has other children - two daughters and another son, Lam Weng Hong, 13.

Understandably, Wong is very protective of her son, a haemophilia patient. He was diagnosed when he was a baby, after he developed unsightly bruises when learning to crawl and using the bouncinet.

She does not allow him to be "too active" but, rather, encourages him to pursue other interests, such as drawing and reading.

"He can draw very well. He draws buildings with intricate details," she proudly says at an interview during the camp. "I still keep the drawings which he's done since he was a little boy, when he drew a 'map of the world'."

"I want to be an architect when I grow up," says Weng Hong, who has learnt to live with his condition.

He experiences discomfort, joint pain and swelling, especially in the ankle. "I feel irritable when this happens," he says. However, he is not about to let life pass him by.

"My hobbies are playing games and the piano. My favourite game is 'Angry Birds'," says the lanky boy.

He is now at Grade Five for piano. At school, he excels in his favourite subjects, Maths and Science.

Weng Hong - who had submitted a poem - and the other camp participants were among the winners of the Live Your Best Life - Haemophilia Or Not! contest launched on World Haemophilia Day, April 17, in the Asia Pacific region.

The children demonstrated creativity and originality in their entries, which comprised comic strips, paintings, drawings, poems and music lyrics. The entries also conveyed the hopeful message that one can lead full, healthy lives despite having haemophilia.

"Even if they're haemophilic, it doesn't mean that they can't be somebody. Nor does it mean that they're inferior to their friends. They just have to do what they do best, for example, singing, swimming or drawing," says Dr Novie Amelia Chozie in a separate interview. She is a paediatrician with Cipto Mangunkusumo Hospital in Indonesia.

"They are perfectly normal children. Only one gene isn't working properly," says Ramsay.

Although there is no cure for haemophilia, patients can learn to manage the disorder. Proper diagnosis and treatment are crucial so that they can maintain a high quality of life. Haemophiliacs can enjoy most of the activities that other people do.

For the Show And Tell segment on the first night of the camp, some of the participants shone. For instance, Nabil Firdaus Mohd Nazri, 11, had brought his palm-sized skateboard, with which he performed some "stunts". This bright-eyed, active Malaysian boy loves skateboarding, he shared, but since he cannot pursue the sport - which is deemed extra dangerous for haemophiliacs due to its high risk of injury - Nabil has cleverly devised a way of pursuing it, nevertheless.

The audience and the emcee, Andy Lee, were baffled. How does one do skate-boarding on the little skateboard?

Nabil promptly showed the audience how. He "skateboarded" on it with his fingers! He demonstrated such nimbleness with it, including manoeuvres like flipping, tossing and catching the skateboard with his fingers, which led to Lee dubbing the item a "fingerboard".

Another patient, 10-year-old Nelson Jian, wowed the audience with his rendition of Justin Bieber's song, Never Say Never, and Jay Chou's Kua Shi Dai (The Era). The chubby, bespectacled lad from China clearly had natural talent and was quietly confident as well.

While aggressive, body-contact sports such as football and rugby should be avoided by haemophiliacs, other sports - like swimming and cycling - are fine. During the camp, the boys had a lot of fun in the swimming pool, doing hydrotherapy exercises under the watchful eye of fellow haemophiliac Hsiao Wei-Chih, as well as Luo Min-Long and Tu Jhih-Wei.

Through a series of talks and practical workshops, healthcare professionals equipped patients and caregivers with the necessary skills and knowledge to manage haemophilia, while representatives from various haemophilia societies shared about the progress they had made in raising awareness and the standard of haemophilia care in Asia.

The camp also aimed at motivating participants to live life to the fullest. Through the "Asia United Challenge" indoor group games, they had the chance to meet and befriend many other people like themselves, all living with the disorder and making the most of life despite the condition. The campsite was transformed into a hive of activity as participants tackled challenges at each of the six games stations: Lego-building, a musical performance, piecing together a jigsaw puzzle, decorating a giant postcard, designing an outfit and a trivia quiz plus landmark mix-and-match. The kids learned to work as a team in order to complete the tasks.

There were more opportunities to kindle new friendships at the campfire dinner on the second night of the camp.

The young patients had a hands-on experience making models from recyclable materials during a model-building session organised by the Taiwan Science Centre.

Meanwhile, parents and caregivers shared their views and experiences in dialogue forums, thereby drawing strength from, and empowering, one another. They also had sessions with specialist nurse Ramsay, and Dr Young Ji-Hsiung, chief of the oncology-hematology division at Taiwan's Lin-Shin Hospital, on haemophilia care.

To deal with any emergencies that might arise, a First Aid area was designated on the camp grounds. Patients could go there for health checks or carry out self-infusion. A nurse was always on hand to assist patients.

Ramsay took a workshop to demonstrate how patients can administer injections to themselves. Practice kits were distributed to all the patients, and Ramsay explained the usage of every item in it, then gave clear step-by-step instructions on how to carry out self-infusion.

More insightful talks were given on the last day of the camp. Dr Kang Jiunn-Horng from Taipei Medical University Hospital spoke on Joint Effort: How To Care For Your Joints while Su Hsiu-Yueh, from the same hospital, gave a talk on Eating Right.

At the end of the camp, patients and caregivers were enlightened on how to manage haemophilia better while members of haemophilia associations gleaned much from the experience of the Taiwan Haemophilia Society in garnering government support for the haemophilia community.