德拉維特綜合症女孩,搶救了100次

2個月前
德拉維特綜合症女孩,搶救了100次

一個9歲的女孩由於患有罕見的限制生命的癲癇病,不得不被她的母親搶救了100多次。

她和她的丈夫邁克說,他們希望這將有助於改善對其他人的診斷和護理。

大約每15,000名活產嬰兒中就有一人患有這種疾病,它是最難治療的癲癇形式之一。

薩姆-斯洛康布說。"佩奇因癲癇發作而停止呼吸,無論她走到哪裡,她的醫療包都會跟着她。裡面有非常有效的藥物......復甦設備......

"這些東西對維持佩奇的生命起着至關重要的作用。她說:"我自己可能已經為她搶救了100多次了。

薩姆-斯洛康布說。"我們永遠不知道我們和佩奇還有多長時間,所以我們只是把每一天都當作我們的最後一天。

英國Dravet綜合症協會說,通過提高認識,它希望更多的人能夠得到更早的診斷,並及時得到他們需要的幫助DeepL。

英國Dravet綜合症協會主席Galia Wilson說。"基因檢測的出現有助於提高診斷率,現在也有了更新、更有效的治療方法。"

"她說:"但是需要更廣泛的認識,使人們關注這些進展,如果它們能給儘可能多的病人和他們的家庭帶來現實的好處。


A nine-year-old girl has had to be resuscitated by her mother more than 100 times due to a rare life-limiting form of epilepsy.

She and her husband Mike said they hoped it would help to improve diagnosis and care for others.

It occurs in around one in every 15,000 live births and is one of the most treatment-resistant forms of epilepsy.

Sam Slocombe said: "Paige stops breathing with her seizures, and wherever she goes, her medical bag goes with her. It contains very potent drugs... resuscitation equipment...

"These things play a vital role in keeping Paige alive. I have probably resuscitated her myself over 100 times," she said.

Sam Slocombe said: "We never know how long we've got with Paige so we just treat every day like it's our last."

Dravet Syndrome UK said by raising awareness it hoped more people can receive an earlier diagnosis and get timely access to the help they need.

Galia Wilson, chair, Dravet Syndrome UK said: "The availability of genetic testing has helped increase diagnosis and now there are newer, more effective treatments available too."

"But wider awareness is needed to bring attention to these advances if they are to bring real-life benefit to as many patients and their families as possible," she said.

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