About hae hk 關於HAE遺傳性血管性水腫病人組織(香港)

The Hong Kong HAE Patient Group (“hae hk”) has been formed in 2019 to support patients with hereditary angioedema (“HAE”) and their families to create awareness, provide education, and gain access to modern treatments so that HAE patients can enjoy a higher quality of life.

遺傳性血管性水腫病人組織 (香港) 有限公司 (“hae hk”) 成立於2019年,旨在支援遺傳性血管性水腫(“HAE”) 病人及其家人,以提高認識,提供教育,探索現代治療,以便HAE病人能夠享受更高的生活質素。

HAE is a very rare genetic and potentially life-threatening disease that occurs in about 1 in 50,000 people. It is caused by C1 esterase inhibitor deficiencies in the body.

HAE是一種可以危害生命的罕有遺傳疾病,約在50,000人中便有一個個案。 它是由體內C1酯酶抑制蛋白缺乏或功能異常引致的。

HAE symptoms include episodes of edema (swelling) in various body parts including the hands, feet, face and airway. In some cases, abdominal pain, nausea, and vomiting can result by swelling in the intestinal wall.

HAE症狀包括身體各種部位(包括手,腳,面部和氣道)的水腫(腫脹)發作。 在某些情況下,腸壁腫脹會導致腹痛,噁心和嘔吐, 情況可持續數天。

Airway swelling is particularly dangerous and can lead to death by asphyxiation.

當患者發生喉頭水腫時特別危險,可能導致窒息死亡。

Unfortunately, there are currently no registered medications for HAE in Hong Kong. Patients needing treatment for life threatening attacks need individual registration of drugs on a “named patient basis”. That is why it is important that patients be diagnosed and registered so that medication is available for use when needed. Known anti-allergy treatments are not effective in treating HAE attacks.

很不幸,香港目前沒有註冊治療HAE的藥物。如果病人需要接受緊急性的藥物治療,他們需要預先登記HAE藥物(這是透過診斷醫院以病人名稱進行登記)。這是非常重要的程序,病人必須經過診斷和預先登記HAE藥物才能在需要時取得藥物使用。治療過敏的藥物在治療HAE發作方面是無效的。

hae hk aims to achieve optimal standards of care and treatment for all people affected by HAE living in Hong Kong so that they too can live a fulfilled and higher quality of life.

hae hk的目標是為所有受HAE影響的人士提供最佳的護理和適當治療資訊,使他們能擁有更充實及高質的生活。

If you wish to know more about hae hk, or wish to join our patient support group as a member, please contact us at hkhaepatientgroup@gmail.com.

如果您想了解更多關於hae hk的信息,或希望加入我們的患者支援小組,請通過hkhaepatientgroup@gmail.com與我們聯繫