Living with haemophilia
A lively, creative bunch of kids at a haemophilia camp proved that the disease is no barrier to leading a full, healthy life.
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 dont do an awful lot: they lie still, theyre 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 babys birth have about a year before the baby starts crawling and walking to get used to the diagnosis.
Poem For A Sports Injury - News
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,
His flamboyant way of winning and his absolute dominance of the sport were unparalleled. But by now, we all know the story unraveled in spectacular fashion. Drama, injury, more drama and then steep decline. His story is similar to thousands of smaller
Craig Cheney, one of the speakers at the “celebration of life” Monday night, quoting a poem he said one of his parishioners had written in response to the girl's death. At the memorial service, Celina's smiling face was all around.
A former Dinnington Comprehensive and Wales High School pupil, Sade loved sports and played rugby until an injury forced her to stop. She also loved music and going out clubbing with her group of friends. “She just liked partying and enjoying herself,”
See: John Wilmot, Earl of Rochester, finest poem The Annihilation of Nothing. I trust you will correct your phraseology forthwith." Didn't Rochester write a lot of blue poetry? In which case, we might just as well say that England have Rogered India.
What Happens? ~ A Love Poem by Hafiz « Kukhahnyoga's Blog
What Happens?
What happens when your soul
Begins to awaken
Your eyes
And your heart
And the cells of your body
To the great Journey of Love?
First there is wonderful laughter
And probably precious tears
And a hundred sweet promises
And those heroic vows
No one can ever keep.
But still God is delighted and amused
You once tried to be a saint.
What happens when your soul
Begins to awake in this world
To our deep need to love
And serve the Friend?
O the Beloved
Will send you
One of His wonderful, wild companions ~
Like Hafiz.