For doctors Paulin Madia and Ruth Kabengele, diagnosing patients is part of their job. But when the time came for them to go on their own diagnostic journey with their sons, who both live with Fragile X Syndrome, it was not the diagnosis that was their biggest challenge, but what came afterwards. We are grateful…
Dr Marcia Braden is a psychologist with over four years of experience supporting families and people living with Fragile X Syndrome. She has also been a pivotal member of FraXI’s Board of Advisors, and was influential in founding FraXI’s clinical arm which unites researchers and medical practitioners in supporting the Fragile X Community in everyday…
Amassing over 50,000 views on YouTube, the short film “Fragile” was produced by Flow Like Water Films in association with Fragile X Society India. With a 30-minute run time and subtitles available in English and Hindi, the film delivers an impactful message about Fragile X Syndrome: it exists, there are people who live with it,…
“Bríd Quinn” is a bit of a household name in the FXS community. She is a regular feature on FraXI’s newsletters, blogs, and socials because she is doing something X-traordinary: she is running 5 half-marathons in the shape of an X across Europe to raise awareness about FXS. Bríd completed her penultimate half marathon in…
去年，FraXI 有幸與 Bríd Quinn 交手（「交手有幸 」這個詞用得太貼切了，她的速度可真快！）。Bríd 是患有脆性 X 綜合症的 Alannah 和 Saorla 的媽媽。我們在這裡報導過她的故事。我們強烈建議您閱讀，但如果您想...
去年，Michal 和 Eva Bednarik 創立了斯洛伐克第一個脆性 X 家庭組織。如今，他們已幫助斯洛伐克多個家庭踏上了罹患脆性 XS 的旅程，並在過程中找到了自己的目標。FraXI 感謝 Michal 和 Eva...
目錄：診斷過程 脆性 X 綜合症 (Fragile X Syndrome, FXS) 是透過基因檢測來診斷的。對懷疑患有 FXS 的患者進行檢測時，通常會抽取血液樣本送至實驗室，以測試 FMR1 基因的存在形式。也可以使用唾液或...
幫助脆性 X 綜合症 (Fragile X Syndrome，FXS) 患者，就是要認可並發揚他們的優點，並針對他們有困難的地方提供支援。會有一系列相互關聯的方面跨越類別。舉例來說，社會教育干預可教導日常生活技能、提供獨立的工具並促進他們融入社會...
行為可以涵蓋脆性 X 綜合症 (Fragile X Syndrome, FXS) 的許多方面。有些行為是獨特迷人的，有些則會破壞日常生活。有些行為可能與自閉症、過度活躍症、焦慮症和憂鬱症等併發症狀有關。通常情況下，個人會同時出現上述症狀，而且行為會隨著時間的推移而改變。
目錄：個案研究：罹患脆性 X 綜合症、對感覺輸入過敏的兒童的感覺飲食 兒童的相關資訊：年齡: 7診斷：脆性 X 綜合症 (FXS)、注意力不足過動症 (ADHD)感官特徵：對多種感官系統的刺激不敏感 已識別的行為：建議的感官飲食計劃 早晨例行活動（目的是讓...
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