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新聞稿 2021年12月20日
總編輯／港聞版編輯／副刊版編輯／健康版編輯
香港血友病會夥拍劉俊謙及馬詠茹 呼籲公眾踩單車累積時數及里數
支持「關注血友病•全城為你加油」
Online version: http://www.public.seedland.hk/press/HKHS/2112-We_Care_pre/
Press release and Photos: Click Here (OneDrive)
「關注血友病•全城為你加油」活動大使劉俊謙及單車運動員馬詠茹。
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。病人日常生活必須盡量小心，以及定期使用藥物補充凝血因子，在適當的照料下一樣可以活出活力人生。
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，香港血友病會舉辦「關注血友病•全城為你加油」，並邀請劉俊謙擔任活動大使，與單車運動員馬詠茹齊齊呼籲大家於2021年12月23日至2022年4月17日世界血友病日期間，不論是在戶外踩單車，還是在室內踩健身單車甚至虛擬單車，都可登入hkhscampaign.com登記時數及里數，累積紀錄成為「關注血友病•全城為你加油」的成績，集全城之力，為血友病病人加油。
左起：湯君耀、湯君慈、馬詠茹、冼康正及周漢寧齊齊支持「關注血友病•全城為你加油」。
林漢威主席：聖誕——別具意義
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活動大使劉俊謙及香港血友病會主席林漢威先生。 |
香港血友病會主席林漢威先生是B型血友病即「聖誕病」的重度患者，小時經常因為出入醫院而缺課，幼年時很多個聖誕節都因為「聖誕病」而要在醫院裡度過，直至其後可以自行注射，生活質素才得以改善。天生樂觀的他從來不以「聖誕病」為忤，更選擇在聖誕節當天與妻子共諧連理，令聖誕節在他的人生中添上另一重意義。林漢威得到家人包括妻子及兩位女兒支持，是跟「聖誕病」共存的積極例子，更在兩位醫生倡導下，與其他病友及家屬合作成立香港血友病會，支援血友病患者及其照顧者，除了擔當同路人的角色，更舉辦不同形式的活動，積極推行教育工作，讓更多市民大眾了解血友病，幫助病友融入社會。」
陳志峰教授：鼓勵患者過正常生活
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香港大學李嘉誠醫學院兒童及青少年科學系陳志峰教授。 |
香港大學李嘉誠醫學院兒童及青少年科學系陳志峰教授指出，血友病患者在嬰兒時期病徵往往並不顯著，一般在幼童期開始學行時，由於較容易跌倒，才會出現瘀斑。如果發現小朋友肌肉或關節時常出血，就要馬上看醫生，醫生會給予病人凝血因子控制病情。血友病患者是否不應該上體育課？陳教授表示雖然過往也有病人被勸阻進行某一些比較容易引致受傷的運動，但現在已有預防性治療方法，只要小心護理，醫生會盡量鼓勵患者過正常生活。
王紹明醫生：醫學科技發展改善患者生活質素
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中文大學內科及藥物治療學系名譽臨床副教授王紹明醫生。 |
治療血友病逾20年並一直致力協助血友病患者的中文大學內科及藥物治療學系名譽臨床副教授王紹明醫生表示：「血友病是通過X染色體遺傳的疾病，因此主要影響男性，女性通常為基因攜帶者，只有部分人會出現病徵。我希望市民大眾能夠理解和接受血友病，例如病人不時要注射藥物、日常生活要避免碰撞等；更加重要的是明白血友病並非傳染病，跟病人同枱用膳或一起生活並不會因此而受到感染。隨着科技發展，血友病患者可以與一般人一樣過正常生活，我樂見近期在治療方面有突破性進展，例如最近在香港獲准使用的長效凝血因子，大大減低了病人每星期的注射次數及時間，有效改善患者的治療及生活質素。如果將來基因治療成功，更可以進一步改善患者的生活。」
關於「關注血友病•全城為你加油」
香港血友病會邀請公眾於2021年12月23日至2022年4月17日世界血友病日期間，不論是在戶外踩單車，還是在室內踩健身單車甚至虛擬單車，都可登入hkhscampaign.com登記時數及里數，累積紀錄成為「關注血友病•全城為你加油」的成績，集全城之力，為血友病病人加油。
關於香港血友病會
香港血友病會在威爾斯親王醫院兒科醫生成明光醫生及瑪嘉烈醫院兒科醫生凌紹祥醫生的倡導下於2006年成立，旨在支援及扶持血友病病友及其家屬、教導病友自我照顧或指導家屬如何照顧病友，與此同時，教育大眾認識及了解血友病，以及為病友爭取更佳治療，令血友病患者可以健康、快樂、獨立及自主地生活。
查詢詳情或索取照片，歡迎致電+852 9534 0813或電郵至 helena@seedland.hk 與Ms Helena Hui或致電 +852 6010 7062或電郵至 kogi@seedland.hk 與Ms Kogi Ko聯絡。
發稿：香港血友病會
代行：Seedland International Limited
電話：+852 3583 3100 傳真：+852 3583 1331
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Press Release 20th December 2021
Hong Kong Haemophilia Society joins hands with event ambassador Terrance Lau and cycling athlete Ms Vivian Ma to launch the “We Care • Fight Haemophilia” campaign, inviting the public to show their support for haemophiliacs by accumulating mileage and time achieved by cycling
Online version: http://www.public.seedland.hk/press/HKHS/2112-We_Care_pre/
Press release and Photos: Click Here (OneDrive)
Event ambassador of “We Care • Fight Haemophilia” Terrance Lau and cycling athlete Vivian Ma.
Haemophilia is an inherited genetic disorder. Lacking the clotting factor in their blood, haemophiliacs’ body would not be able to stop bleeding if 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 complications. With careful preventive measures and appropriate treatment, however, haemophiliacs can live an active and vibrant lifestyle.
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 joins hands with event ambassador Terrance Lau and cycling athlete Ms Vivian Ma to launch the “We Care • Fight Haemophilia” campaign, inviting the public to click into hkhscampaign.com to register the mileage and time achieved by cycling, be it cycling outdoor, in a gym, or riding a virtual bike, between 23rd December 2021 to 17th April 2022 (World Haemophilia Day). The accumulated results will reflect the support rendered by the city to patients suffering from haemophilia.
From left: Chris Tong, Bruce Tong, Vivian Ma, Christopher Sin and Henick Chou supporting “We Care • Fight Haemophilia”.
Mr. Henry Lam, Chairman of the Hong Kong Haemophilia Society: Christmas is special
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Terrance Lau, event ambassador, and Mr. Henry Lam, Chairman of the Hong Kong Haemophilia Society. |
Mr. Henry Lam, Chairman of the Hong Kong Haemophilia Society, has suffered from haemophilia B, i.e. the Christmas Disease, since young. Not only did Henry miss a lot of his school days because of his health conditions, his recollection of Christmas as a child was mostly related to hospitals. It was only until self-injection was introduced that his quality of life started to improve. Christmas became even more meaningful to Henry when he and his wife decided to tie the knot on this festive day. With immense support from his wife and two daughters, Henry has not only done a good job in living an active life, but has also devoted himself in supporting other patients. Initiated by two doctors, he joined hands with a number of fellow patients to form the Hong Kong Haemophilia Society, to play the role of a reliable companion to one another, to render support to haemophiliacs and their caretakers, and to proactively promote the awareness for haemophilia, thus in turn enhance acceptance and support to haemophiliacs.
Professor Godfrey Chan: Haemophiliacs are encouraged to live a normal life
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Professor Godfrey Chan of the Department of Paediatrics & Adolescent Medicine, Li Ka Shing Faculty of Medicine, The University of Hong Kong. |
Professor Godfrey Chan of the Department of Paediatrics & Adolescent Medicine, Li Ka Shing Faculty of Medicine, The University of Hong Kong, says that the symptoms of babies with haemophilia are rarely identified until toddler age, when they are prone to falling and forming bruises. Parents should immediately consult a doctor if they detect abnormal bleeding in their children, be it in the muscles or in the joints. Doctors will prescribe medications with coagulation factors to keep the conditions under control. With preventive treatments available nowadays, children suffering from haemophilia can take part in PE lessons and live a normal life.
Dr. Raymond S.M. Wong – Advancement in medical technology improves the quality of life of patients suffering from haemophilia
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Dr. Raymond S.M. Wong, Clinical Associate Professor (Honorary), Department of Medicine & Therapeutics, The Chinese University of Hong Kong. |
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, says, “Typically inherited from one’s parent through an X chromosome, haemophilia mostly affects male while female would be a gene carrier, with only a few of them having symptoms. I wish that the public would understand and accept haemophilia, for instance, patients have to take injections and avoid injury, the disease is not contagious, no one will be infected by sharing a meal or living together with a patient. 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 including the availability of long-acting factors in Hong Kong, which reduces the frequency and time of injections, hence improve the patients’ quality of life. If gene therapy were to be successful in the future, the patients could further envision a brighter prospect.”
About “We Care • Fight Haemophilia
Hong Kong Haemophilia Society cordially invites the public to click into hkhscampaign.com to register the mileage and time achieved by cycling between 23rd December 2021 to 17th April 2022 (World Haemophilia Day). The accumulated results will reflect the support rendered by the city to patients suffering from haemophilia.
About Hong Kong Haemophilia Society
Initiated by paediatricians Dr. Shing Ming Kong of Prince of Wales Hospital and Dr. Ling Siu Cheung of Princess Margaret Hospital, Hong Kong Haemophilia Society was established in 2006. The Society aims 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.
Released by Seedland International Limited
On behalf of Hong Kong Haemophilia Society
Media enquiries:
Tel: +852 3583 3100 Fax: +852 3583 1331
Website: www.seedland.hk E-mail: info@seedland.hk
Contacts:
Ms Helena Hui (+852 9534 0813 / helena@seedland.hk )
Ms Kogi Ko (+852 6010 7062 / kogi@seedland.hk )