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Online version: http://public.seedland.hk/press/HKHS/2012-HKHS_Sharing/
血友病是先天性遺傳病，患者體內因為欠缺凝血因子，受傷出血時不能有效止血，會出現流血不止的情況，或是大幅瘀青。重度患者更有機會在毫無原因之下出現關節及其他重要器官自發性出血，長遠令關節永久受損，影響活動能力，如遇上腦出血的話，更有可能造成長期的頭痛、癲癇、意識不清，甚至危及性命。血友病可分為A型及B型，其中於1951年發現的B型血友病以首位病人Stephen Christmas的名字命名為聖誕病（Christmas Disease）。適逢聖誕佳節，香港血友病會推出由前香港棒球代表隊成員及著名演員胡子彤參與演出，並由樂壇新秀黃進林獻唱宣傳歌曲的最新宣傳短片，呼籲市民大眾關注血友病，為血友病病人送上祝福及支持。
Press Release 14th December 2020
As Christmas approaches, Hong Kong Haemophilia Society joins hands with celebrities to call upon understanding and support for patients of the “Christmas Disease”, while expert of the Chinese University of Hong Kong expresses positive views towards the recent medical breakthroughs
Online version: http://public.seedland.hk/press/HKHS/2012-HKHS_Sharing/
Haemophilia is an inherited genetic disorder. Lacking the clotting factor in their blood, haemophiliacs’ body would not be able to stop bleeding once they are hurt, which would in turn cause haemorrhage or large bruises. Severe haemophiliacs could develop spontaneous haemorrhage in joints and vital organs that may lead to permanent joint damage, hindering their ability to move. In case of cerebral haemorrhage, victims could develop long-term headache, epilepsy, conscious disturbances or even life-threatening conditions. There are two main types of haemophilia: haemophilia A and haemophilia B. The latter, which was first discovered in 1951, is also known by the eponym Christmas Disease, named after Stephen Christmas, the first patient diagnosed with haemophilia B. With Christmas around the corner, the Hong Kong Haemophilia Society is presenting a new promotional video, featuring former Hong Kong Baseball Team member and renowned actor Mr. Tony Wu, with a theme song performed by talented vocalist Michael Wong, calling upon the public to learn more about haemophilia and offer their blessing and support to the patients.
Haemophilia, a genetic disorder, can only be radically cured with gene therapy, which is currently only in the research stage. The disease is now treated and controlled primarily by replacing the missing blood clotting factors that are isolated from human blood serum or recombinant. In the past decade, Hong Kong Hospital Authority has provided the factors for patient to carry out self-injection. With two or three injections every week, the factors can be maintained at a certain level. Mild haemophiliacs can do light sports while patients with severe symptoms have to keep their activities to a minimum to avoid getting hurt or bleed. Hong Kong Haemophilia Society was established to provide support and assistance to haemophiliacs and their family. By educating its members to take care of themselves or their family to attend to the patients’ needs, as well as cultivating the public to get to know and understand haemophilia, the Society fights for better treatment for its members, helping its members live a more healthy, happy, independent and autonomous life.
Mr. Henry Lam, Chairman of Hong Kong Haemophilia Society – to break through my Christmas Disease on Christmas Day
With less than 1% of factor IX in his body, Mr. Henry Lam, Chairman of the Hong Kong Haemophilia Society, is a victim of haemophilia B, i.e. the Christmas Disease. Henry was diagnosed at a young age after his family discovered that the wound on his regular vaccination swelled for a long time, in addition to a history of the disease in his family. Henry missed many of his school days when he was young because he had to go to the hospital frequently for injection. His recollection of Christmas as a child was mostly related to hospitals because of the Christmas Disease. It was only until self-injection was introduced that his quality of life started to improve. Christmas becomes even more meaningful to Henry when he and his wife decided to get married on this festive day. He shared, “We were notified that the wedding venue was available on Christmas Day, and we gave no second thought to set the date. Planning my big day on Christmas symbolised my aspiration to have a breakthrough for the Christmas Disease that I am carrying on Christmas day.”
A father of two lovely daughters, Henry established the Hong Kong Haemophilia Society driven by his concern that many children suffering from haemophilia were still unable to live a normal life because of the lack of proper medication. He said, “Initiated by two doctors, I joined hands with a number of fellow patients to form the Hong Kong Haemophilia Society. Haemophilia is a life-long disease, the Society cannot alter the fact that we fell victim to such disease, but in the past 14 years, we have played the role of a reliable companion to one another, and by holding different events, we have proactively promoted the awareness for haemophilia. Apart from providing assistance to our members and their family, we hope that the public can learn more about haemophilia, thus more people will render care, acceptance and support to haemophiliacs in daily life.”
Mr. Hunter Lam, member of Hong Kong Haemophilia Society – a stay-at-home child
A severe haemophilia A patient, the experience of Hunter Lam reflects accurately the difficulties faced by haemophiliacs and their family. Hunter’s family discovered that there were spontaneous bruises on his skin when he was little, and only with twists and turns, was he eventually diagnosed with haemophilia. Due to financial limitation, insufficient knowledge of the disease and the less-than-ideal medical development back then, Hunter could only have injection intermittently with medication of questionable quality. He would suffer from allergic reaction of itchiness all over his body after injections and in desperation, his family even turned to folk remedies. From the appearance, nothing is unordinary about Hunter. When he was asked if he likes to do sports, he signed an “O” and explained, “My experience of doing sports is zero. I have never had PE lessons when I was a child because the school thought that it would be best if I did not take PE lessons. So, whenever my classmates were jumping up and down, I was always the spectator on the sides.” A minor bump could lead to major haemorrhage for severe haemophiliacs like Hunter. Describing himself as a stay-at-home child, there were numerous social events that he could not attend besides sports. With medical advancement, patients can now carry out self-injection as a preventive measure, which allows them to live a relatively normal life.
As a haemophilia patient, Hunter was met with many obstacles in his studying and career. By participating in the Hong Kong Haemophilia Society as one of the backbone members, he hopes that the public can take a step further to understand haemophilia, “To most people’s understanding, haemophilia is all about non-stop bleeding and haemorrhage, but what they don’t get is the implications of such symptoms. They are at a loss when they meet a haemophiliac. I hope that the public will take a step to get to know the disease, understand the cause and attendance, and be considerate if we cannot participate in some activities or perform some actions. A little more care and consideration would go a mile.”
Dr. Raymond S.M. Wong – Advancement in medical technology ameliorates the experience in treatment and living standard of haemophilia patient
Helping patients fight haemophilia for more than two decades, Dr. Raymond S.M. Wong, Clinical Associate Professor (Honorary), Department of Medicine & Therapeutics, The Chinese University of Hong Kong, said, “It is estimated that there are about 400,000 haemophilia patients worldwide and about 222 of them reside in Hong Kong. Typically inherited from one’s parent through an X chromosome, the disease mostly affects male while female would be a gene carrier, with only a few of them having a show of symptoms. Many haemophiliacs showed symptoms once they were born, hence hampering their development when they were growing up. My hope is that the public would understand and accept haemophilia, for instance, patients have to take injections, children with haemophilia have to be extra cautious in PE lessons and patients have to avoid collisions in sports. More importantly, the public should understand that haemophilia is not contagious; no one will be infected by sharing a meal or living together with a patient. With proper treatment, haemophiliacs can live a normal life. As technology advances, the influence of the disease to the patient is getting less and less significant. I am delighted to see breakthroughs in haemophilia treatment in recent years including long-acting factors and subcutaneous injection, which greatly improve the treatment and hence patient’s quality of life. I am truly impressed by the changes that development of medical technology has induced on haemophilia patients. If gene therapy were to be successful in the future, I wish the patients could live an even better life and envision a brighter prospect.”
About Hong Kong Haemophilia Society
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